Identifying Health Priorities for a Vulnerable Underserved

IDENTIFYING HEALTH PRIORITIES FOR A VULNERABLE UNDERSERVED

COMMUNITY IN UGANDA, AFRICA USING COMMUNITY BASED

PARTICIPATORY RESEARCH AND A PHOTOVOICE APPROACH

Cheryl Finch Wallin

A Dissertation Submitted to the Faculty of

The Christine E. Lynn College of Nursing

In Partial Fulfillment of the Requirements for the Degree of

Doctor of Philosophy

Florida Atlantic University

Boca Raton, FL

August 2020

ACKNOWLEDGEMENTS

Thank you to the late James and Lilly Finch, my parents, who always believed in me and loved me unconditionally.

Thank you, Ron Wallin, my husband of almost 20 years, my partner in life and ministry, for your love, constant support, and encouragement.

Thank you to our children, James Travis Finch, Rachel Wallin Haneschlager, and

Brian Wallin, for the joy and pride you have given me.

Thank you Dr. Charlotte Barry, my dissertation chair, encourager, and guide through this journey.

Thank you, Dr. Beth King, Dr. Linda Weglicki, and Dr. Betsy Olson, my committee members, for your expertise and always challenging me to aim higher.

Thank you to Dr. Jill Winland-Brown for starting me on this nursing journey nearly 40 years ago, Dr. Rozzano Locsin for inspiring me to develop a community health partner program in Uganda, and Dr. Patricia Liehr for guiding me in my pursuit of understanding cultural humility.

Thank you to Paula Dorhout MSN, RN, my nursing mentor and friend for 32 years, for always supporting and always believing in me.

Thank you, Tujje Ministries and the community of Namagera, Uganda for trusting me and walking along side me.

I thank my Lord Jesus Christ for His ever present love, for leading me to the beautiful people of Uganda, for sustaining me that I will not grow weary. Galatians 6:9.

iv ABSTRACT

Author: Cheryl Finch Wallin

Title: Identifying Health Priorities for a Vulnerable Underserved Community in Uganda, Africa Using Community Based Participatory Research and the Photovoice Approach

Institution: Florida Atlantic University

Dissertation Advisor: Dr. Charlotte D. Barry

Degree: Doctor of Philosophy

Year: 2020

The purpose of this descriptive phenomenological study was to give voice to an underserved and vulnerable population in Uganda, Africa to advocate for health priorities. Nineteen members of the village of Namagera, identified as a leper colony, were selected by community members and volunteered to participate in every element of this study. Descriptive phenomenology was the guiding philosophy and community- based participatory research methods and photovoice provided the lens for social action.

Leininger’s theory of culture care diversity and universality (Leininger & McFarland,

2006) anchored the study in cultural caring and the community nursing practice model

(Parker et al., 2020) kept the researcher grounded in the purpose of advancing the science of caring in community nursing. The research team included the researcher, the 19 participants, and six research assistants, who also served as language facilitators. Using photovoice methods, participants identified strengths and needs and used digital cameras to capture health concerns in the community. Eighty photos were analyzed by the

v participants and priorities were determined. The selected photos were placed on a photo board and shared with the whole community for input. Community members selected the health priorities and ranked them in importance: access to clean water, sanitation, disease, challenges for the elderly and disabled, lack of medical treatment, transportation, unemployment, and protection of the environment. The participants categorized the health priorities into three clusters of themes: basic needs, safety, and social/environmental. The themes were further incorporated into action plans identifying impeding factors for which the community would require outside assistance and promoting factors for which the community could solve themselves. Findings of this study illuminate the emergence of community empowerment: Community members found their voices, identified health priorities, and advocated for solutions.

vi DEDICATION

To the loving memory of my mother, the first nurse in my life, Lilly Pitts Finch Colmant,

RN. The woman who showed me what it means to be a woman of faith, a devoted mother, loving wife, loyal friend, and dedicated nurse. Mom, I love you and so wish you

could have seen this achievement that originated from the love of nursing and love of

helping others that you instilled in me.

IDENTIFYING HEALTH PRIORITIES FOR A VULNERABLE UNDERSERVED

POPULATION IN UGANDA, AFRICA USING COMMUNITY BASED

PARTICIPATORY RESEARCH AND THE PHOTOVOICE APPROACH

LIST OF TABLES ...... xiii

LIST OF FIGURES ...... xiv

CHAPTER 1. INTRODUCTION ...... 1

Phenomenon of Interest ...... 2

Photovoice ...... 5

Background, Significance, and Link to Caring Science ...... 6

Colonial Impact on Uganda ...... 8

Hansen’s Disease ...... 11

Stigma Associated with Hansen’s Disease and Community Characteristics ...... 12

Separation from General Society ...... 14

Purpose of the Study ...... 17

Research Questions ...... 18

Researcher’s Perspective and Conceptual Definitions ...... 18

Significance of This Study ...... 20

Chapter Summary ...... 21

CHAPTER 2. LITERATURE REVIEW ...... 22

Introduction ...... 22

Definition of Terms ...... 22

viii Cultural Humility ...... 22

Cultural Safety ...... 28

Community Empowerment ...... 30

Empirical Studies ...... 33

Community Empowerment ...... 33

Community-Based Participatory Research ...... 34

Photovoice ...... 34

Summary of the Literature ...... 41

Gap in Literature ...... 45

Chapter Summary ...... 46

CHAPTER 3. METHODOLOGY ...... 47

Introduction ...... 47

Cultural Humility Guiding Entry into the Community ...... 48

Study Research Design ...... 48

Community-Based Participatory Research and Photovoice ...... 49

Training of Research Assistants ...... 53

Setting and Participants ...... 53

Setting ...... 53

Population ...... 54

Target Population and Sampling ...... 55

Entry into the Community and Recruitment ...... 55

Pre Photography Session ...... 57

Data Generation ...... 58

ix Participant Training Session ...... 59

Photography Session ...... 60

Post Photography Session 1 ...... 62

Post Photography Session 2: Data Analysis Plan ...... 62

Post Photography Session 3: Preparation for the Presentation to the

Community ...... 64

The Community Presentation ...... 65

Study Rigor ...... 68

Ethical Considerations ...... 69

Strengths and Limitations of the Study ...... 71

Strengths ...... 71

Limitations ...... 71

Chapter Summary ...... 72

CHAPTER 4. FINDINGS ...... 73

Introduction ...... 73

Study Unfolding ...... 74

Emerging Themes ...... 74

Strengths and Identified Needs of the Community ...... 74

Access to Clean Water ...... 79

Sanitation Related to Food Preparation ...... 80

Sanitation Related to Pit Latrines ...... 81

Elderly and Disabled Challenges ...... 82

Disease ...... 83

x Lack of Medical Treatment ...... 85

Transportation ...... 86

Environment ...... 87

Unemployment ...... 88

Data Analysis ...... 90

Variant Themes ...... 92

Synthesis Meaning ...... 94

Study Rigor ...... 98

Chapter Summary ...... 100

CHAPTER 5. DISCUSSION AND RECOMMENDATIONS ...... 102

Theoretical Approach ...... 102

Research Methodology Approach ...... 106

Findings ...... 107

Access to Clean Water ...... 108

Sanitation Related to Food Preparation ...... 109

Sanitation Related to Pit Latrines ...... 109

Other Safety Issues ...... 109

Social/Environmental ...... 110

Findings Post Script ...... 110

Nursing Practice ...... 111

Education ...... 112

Policy Development ...... 114

Recommendations for Nursing Research ...... 115

xi Advancing Caring Science ...... 116

Summary ...... 118

APPENDICES ...... 121

Appendix A. FAU IRB Project Approval ...... 122

Appendix B. FAU IRB Project Amendment Approval ...... 124

Appendix C. What Matters to Me Document ...... 125

Appendix D. Health Priorities ...... 126

Appendix E. Study Protocol ...... 127

Appendix F. Data Management Plan ...... 136

Appendix G. Community Study Approvals ...... 140

Appendix H. Adult Verbal Consent Form ...... 142

Appendix I. Photo/Video Release Form ...... 143

REFERENCES ...... 144

xii LIST OF TABLES

Table 1. Purpose and Study Aims ...... 47

Table 2. Community-Based Participatory Research Steps ...... 51

Table 3. Participant Photography Groups ...... 61

Table 4. Tools and Questions ...... 66

Table 5. What Matters to Me? ...... 75

Table 6. Categories of Health Promotion Themes ...... 78

Table 7. Access to Clean Water ...... 79

Table 8. Sanitation Related to Food Preparation ...... 80

Table 9. Sanitation Related to Pit Latrines ...... 82

Table 10. Elderly and Disabled Challenges ...... 83

Table 11. Disease ...... 84

Table 12. Lack of Medical Treatment ...... 86

Table 13. Transportation ...... 87

Table 14. Environment ...... 88

Table 15. Unemployment ...... 89

Table 16. Theme Clusters ...... 90

Table 17. Factors and Action Plans ...... 91

Table 18. Variant Themes ...... 94

Table 19. Participant Statements Indicating Community Empowerment ...... 97

Table 20. Theoretical Relationships ...... 106

xiii LIST OF FIGURES

Figure 1. Picture Board ...... 78

Figure 2. Jerrycans Lined Up at the Borehole ...... 80

Figure 3. Preparing Food on the Ground with Animals Nearby ...... 81

Figure 4. Uncovered Pit Latrine with Large Hole ...... 82

Figure 5. Disabled Individual ...... 83

Figure 6. Mosquito Net with Holes Used on Bed ...... 85

Figure 7. Infant with Fractured Leg ...... 86

Figure 8. Road Leading into Village ...... 87

Figure 9. Burnt Papyrus ...... 88

Figure 10. Business Women Selling Sugar Cane ...... 90

xiv CHAPTER 1. INTRODUCTION

On a trip to Uganda, Africa, I accompanied a team of local community health partners to a remote village amid sugar cane fields and alongside Lake Victoria. As we approached the village, children were seen with jerrycans (containers of water) carried atop their heads returning from Lake Victoria. In this same body of water from which they had collected water for drinking and cooking, animals and humans were observed bathing and defecating, with humans also washing clothes and dishes. Over 100 children, many with swollen bellies, surrounded the team. Many of the villagers bore the disabling effects of leprosy and other debilitating conditions. Some had nubs where once there were fingers or toes, some were wheelchair-bound, while others were blind or were amputees missing a limb or at best sporting a wooden prosthesis. All bore the signs of material poverty but exuded joy through singing, dancing, and eagerly greeting their guest. I was immediately drawn to this community and have visited there several times over the past eight years. I have seen their struggles and challenges as they cope with debilitating and stigmatizing conditions; health inequities; and the health issues of unclean water, insufficient housing, and exposure to disease-bearing insects and parasites. I have also seen their strengths, their resiliency, the commitment to their neighbors and their community, and their eagerness to share the little that they possess.

Through the years my commitment and passion for this community has fueled my desire to walk alongside them as they harness their strengths and resources in a community effort to self-advocate for a healthier community.

1 Phenomenon of Interest

The phenomenon of interest for this descriptive phenomenological study was community empowerment. A qualitative method using a community-based participatory research (CBPR) approach (Israel et al., 2013) with photovoice (Wang & Burris, 1997) as a strategy was used for this study, guided by Leininger’s culture care diversity and universality theory (Leininger & McFarland, 2006) as the overarching grand theory and framed by Parker and Barry’s community nursing practice model (Parker et al., 2020).

Empowerment has been described by Rappaport (1987) as multilevel, considering individuals, communities, and organizations. Empowerment suggests control over one’s life and a concerned interest in social, political, and legal influences that may impact one’s control (Rappaport, 1987). Freire (1972) described empowerment in relation to education. Freire posited that to understand the needs of the oppressed, one must enter the world of the oppressed. He suggested that educational curriculum failed to meet the needs of marginalized students as it did not recognize social and cultural discrimination barriers. According to Freire, hope is crucial to empowerment. It is hope that gives individuals and communities the motivation and energy to begin the struggle to change the status quo. CBPR can promote community empowerment by providing a platform for individuals of a community to come together, identify their strengths and challenges, and advocate for themselves in their community (Israel et al., 2013). Leininger has maintained in cultural diversity care and universality theory that individuals and communities are best equipped to understand the care that would best suit them and by respecting their lifeways they would be empowered to determine their own care

(Leininger & McFarland, 2006).

2 CBPR is a collaborative approach rather than a method (Israel et al., 2013). Israel et al. (2013) described CBPR as a partnership approach to research that includes community members in all aspects of research from start to finish. All partners equally share expertise and are equal partners in decision-making. The goal of CBPR is to gain knowledge as well as understanding and to integrate that knowledge with interventions, policy, and social change to improve the health of the community. Israel et al. identified nine principles of CBPR: (a) acknowledging the community as a unit of identity, (b) building on community strengths and resources, (c) facilitating collaborative, equal partnerships in all phases of empowering and power-sharing processes, (d), co-learning and capacity building, (e) integrating and achieving balance between knowledge generation for mutual benefit of all, (f) focusing on local relevance of public health problems and ecological views that impact determinates of health, (g) involving systems development using cyclical and iterative processes, (h) disseminating results to partners and involving partners in wider dissemination of results, and (i) involving long-term processes and commitment to sustainability (pp. 8-11). Israel et al. presented seven core phases of CBPR: (a) forming partnerships, (b) assessing community strengths and dynamics, (c) identifying priority local health concerns and research questions, (d) designing and conducting etiologic, interventions, and policy research, (e) feedback and interpreting the findings, (f) disseminating, and (g) maintaining, sustaining, and evaluating the partnership (pp. 11-13). CBPR emphasizes reciprocal learning; the professional must release the notion of being an expert and engage in partnership with the community (Israel et al., 2013).

3 Israel et al. (2013) identified two concepts that are unique and necessary when using a CBPR approach with cultures different from that of the researcher. The first concept is cultural safety, which appoints power to the community to voice whether or not members feel safe. Cultural factors may influence the professional-community relationship. It is incumbent on the professional to recognize that cultural, social, economic, political, or historical inequities may be the basis for mistrust of the outside professional.

The second concept is cultural humility, a lifelong process of dynamic self- reflection and examination of bias (Tervalon & Murray-Garcia, 1998). Tervalon and

Murray-Garcia (1998) further described cultural humility as acknowledgment of and equalizing of power imbalances with a goal of entering into mutually beneficial, nonpaternalistic relationships with communities of defined populations. To successfully enter another community, the professional must acknowledge cultural safety and enter with a sense of cultural humility and a goal to support community empowerment.

A research strategy that supports community empowerment while acknowledging cultural safety and cultural humility is photovoice. Photovoice is a strategy that places cameras in the hands of the study participants. The participants are asked to take pictures of their experiences and their environment to share their story or their concerns. This approach gives voice to people who have been marginalized by society, who have limited power, and essentially have no voice (Musoke et al., 2015). Not only has the use of photography encouraged discussion and dialogue among communities as well as empowering participants, it can serve as an effective instrument for disseminating information to policy makers (Walker & Early, 2010). In colonial Uganda, communities

4 of persons diagnosed with Hansen’s disease (leprosy) were originally established in the early 1900s and received financial support from the colonial government as well as the church (Vongsathorn, 2012). However, due to post-colonial conflicts and decreased humanitarian funds, support for the communities decreased (Vongsathorn, 2015).

Photovoicing has the potential to be a very informative and empowering approach to giving voice to members of this underserved community and to developing a vehicle to advocate for their health priorities.

Photovoice

Walker and Early (2010) credited the use of photovoice as being a culturally appropriate technique that has been beneficial to community health educators, non- government organizations, and other advocates such as community-based organizations working with vulnerable and underserved communities. An NGO is a non-profit organization that may work anywhere within the nation while a CBO is a non-profit organization that works exclusively within their community. Building partnerships between communities and groups such as NGOs or CBOs can result in building capacity and sustainability of programs (Walker & Early, 2010). These partnerships with communities are supported by Freirean philosophy outlined in Pedagogy of the

Oppressed, where sustainable change can occur when communities work together (Freire,

1972). In this community there are local NGOs and CBOs working in the surrounding areas and also presently working within the community.

Photovoice is an evolving and increasingly used method in CBPR (Fournier et al.,

2014; Walker & Early, 2010) to document and reflect reality (Kuratani & Lai, 2011;

Wang & Burris, 1977) through video or photo images. Photo-elicitation, a qualitative

5 research technique developed in 1957, is a core component of photovoice first described in 1997 by Wang and Burris, who pioneered the technique with rural women in China.

They described photovoice as having three main goals: (a) To enable people to record and reflect their communities’ strengths and concerns, (b) To promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and (c) To reach policy makers (p. 369).

Chapter 1 provides background information regarding the community of interest, including the impacts of post-colonization on its citizens, a review of Hansen’s Disease, and the stigma and separation of the pathologized community from general society. The purpose of the chapter is described, the research questions presented, and the theoretical perspective as well as the researcher’s perspective.

Background, Significance, and Link to Caring Science

Uganda, located in sub-Saharan East Africa, is comparable in geographical size to the state of Oregon. Civil war ravaged Uganda for centuries until its colonization by the

British. Uganda earned its independence as a sovereign nation in 1962 (Ofcansky, 1999).

During its 58 years of independence, Uganda has experienced wars for approximately 30 years. However, the country has known relative peace for the past several years. The

World Bank (n.d.) reported that in 2018, the average annual household income for

Ugandans was $700 per year, and the United Nations (2015) has listed Uganda as a least developed country. Uganda faces the physical and economic challenges of access to clean water, sanitation, and contagious illness. It is estimated that 60% of the population in sub-

Saharan Africa do not have access to piped water and sanitation, which correlates to wealth in those countries (UNICEF and World Health Organization [WHO], 2012). Lake

6 Victoria is Africa’s largest lake and chief reservoir of the Nile River (Encyclopedia

Britannica, 2020). In addition to the public health issues of lack of access to clean water and diseases facing the Ugandans in this region, the lake is infested with several parasites including schistosomiasis (Centers for Disease Control and Prevention [CDC], 2013).

This observation is supported by the UNICEF and WHO’s (2012) report, “Progress on

Drinking Water and Sanitation.” Another concern related to unclean drinking water is intestinal worms. A 2001 study found that 60% of Ugandan school children were positive for intestinal worms (Kabatereine et al., 2001), compounding the public health issues facing the Ugandans in this region.

In addition to the challenges of access to clean water, sanitation concerns, and diseases related to parasites, there is a high incidence of sexually transmitted diseases in sub-Saharan Africa. The WHO (2017) estimates that 63 million incidences of newly diagnosed cases of sexually transmitted disease were reported for sub-Saharan Africa in

2016. The lack of clean water, sanitation issues, and prevalence of disease are magnified by poverty.

In addition to sexually transmitted diseases and diseases borne from unclean drinking water and poor sanitation, malaria is a highly significant health care issue in

Uganda. There were 8.6 million reported cases of malaria in Uganda in 2017 (WHO,

2018). Uganda has the third highest malaria death rates in Africa and some of the highest recorded transmission rates in all of Africa (Malaria Consortium, n.d.). Nakazibwe

(2006) reported that between 70,000 and 100,000 children die each year due to malaria infections and accompanying complications.

7 Complicating the challenges of poverty and the previously mentioned diseases is the incidence of Hansen’s disease. Between the years of 2012-2016 there were 1,240 reported new cases of Hansen’s disease in Uganda (Aceng et al., 2019). The Ugandan

National Leprosy Registry reported an increase in Hansen’s disease, identifying most new cases in the Busoga region (Walukamba, 2010). In 2013, Ugandan Health Minister

Christine Ondoa reported that at least 400 new cases of Hansen’s disease are registered annually (Ayebazibwe, 2013). It is unknown exactly how many communities for those living with Hansen’s disease, referred to as leper colonies by Ugandans, exist in Uganda today. It is clear that lack of access to clean water, sanitation, and communicational diseases are public health concerns in this underdeveloped region.

Colonial Impact on Uganda

Before considering the impact of colonization on Uganda, one must consider the path that led to colonization. Early Ugandans were cultivators, herders, and hunters using iron technology to create tools and weapons as early as the 4th century B.C. Kingdoms and centralized states developed over several centuries with clan leaders as rulers.

Buganda was the first kingdom to allow political participation from all clans. By the 19th century Buganda had emerged as the most powerful kingdom with imperial tendencies, conquering other lands and establishing an internal trade system as well as a strong military. In the mid-19th century the European colonizing of Uganda began with the arrival of ivory and slave traders as well as seekers of the source of the Nile River

(Ofcansky, 1999). Uganda remained a British colony until 1962 when they won independence as a sovereign nation.

8 Colonial Uganda was governed by a paternalist model. Paternalism was defined by Corbett and Fikkert (2014) as the action of doing for others what they have the ability to and can do for themselves. Under British colonial rule, Uganda was initially described as a child; then in the latter years of colonialism as an adolescent, with Great Britain as the parent (Summers, 2017). The nation was seen as a child who needed protection and guidance in the early years of colonization. Traditionally many children in Uganda were sent away from home between the ages of 3 and 7 to live with sponsors where the children would be in stricter disciplinary environments. Older children were sent to even more strict environments, living with government officials and even in the palaces. The children were taught to kneel to their superiors, to agree with everything said, and to offer extreme flattery.

These behaviors remain common among Ugandans today. By the end of World

War II, the British government began to see Ugandans as rebellious adolescents. British officials dismissed the protest and anger exhibited by Ugandans as nothing more than a maturation phase rather than accepting the possibility that it may have been British dominance, lack of resources, abusive policies, or misrule that were the underlying causes for the rebellion (Summers, 2017). A British investigative report after the uprisings of 1945 and 1949 determined that the root cause of the uprisings was not based on legitimate economic grievances, but as a result of the British government, distracted by the war, failing to provide close parenting. By the late 1950s Uganda began its struggle towards independence. Y.S. Bamutta, a Ugandan senior politician, asserted that for a nation to grow it must be given responsibility, using the analogy of Uganda being in its childhood for 60 years and not being trained to walk but given a stick on which to

9 lean. Bamutta further declared that a child must be allowed to fall and pick oneself up

(Summers, 2017). Unlike colonization where apprenticeships and clerkships had prevailed, the people must be given the opportunity to practice authority and responsibility on their own. Bamutta proclaimed that for the country to grow it must face its own consequences without the benevolent protection of an imperial power. Bamutta also pointed out that although the British had 60 years to teach the Ugandans independence, accountability, and self-reliance, they had failed to do so (Summers,

2017).

Once independence was achieved in 1962, the paternalism of colonization was replaced by oppression under the brutal dictatorships of Obote and Idi Amin. Amin is said to have destroyed Uganda by unleashing a reign of terror, killing tens of thousands and expelling Asians, British, and Israelis, effectively destroying Uganda’s economy.

Between 1970-1979 approximately 500,000 Ugandans lost their lives under Obote and

Amin. Another 300,000 perished between 1979-1986 as a result of civil wars and human rights violations (Ofcansky, 1999). Even after earning its independence both from paternalistic colonization and oppressive dictatorships, there remains today a cultural stance of “The man with the key is gone” (Clark, 1998, p. 146). Clark provided a description of life in modern Uganda and shared the story of going to a store to purchase an item. The store was locked, and the clerk stated he could not open the store as the

“man with the key is gone.” Such is common in post-colonial Uganda; there is a dependency to rely on outside assistance and direction rather than self-reliance and self- directedness (Clark, 1998).

10 Though Uganda has experienced a turbulent past, the country today is a democratic republic with Yoweri Museveni as president since 1986 (Ofcansky, 1999).

The country still struggles economically; however, there has been an increase in average household incomes from $320 in 1990 to $700 in 2018 (World Bank, n.d.). Despite the current health challenges, life expectancy increased from 46 in 1990 to 62 in 2018

(World Bank, n.d.). There is free and public education for children as well as many private educational settings sponsored by NGOs and religious bodies. In the technology arena, Ugandans have conducted financial transactions using cell phones since 2007

(Ndiwalana et al., 210). Ugandans have proven to be a resilient people in the face of tragedies attributed to cruel dictatorships and civil wars as well as the AIDS and Ebola epidemics.

Hansen’s Disease

The community identified for this research is known as the Namagera leper colony, largely populated by residents who have been diagnosed with Hansen’s disease.

The approximately 120 adult residents are generally between the ages of 40-65 years of age and are considered elderly by Ugandan terms, with an average life expectancy of 62 years (World Bank, n.d.). Much of the adult community members are affected by leprosy; however, some have other physically disfiguring ailments such as elephantiasis.

Hansen’s disease, also known as leprosy, is a chronic infectious disease affecting primarily the skin, peripheral nerves, upper respiratory tract, and eyes. Hansen’s disease is curable yet remains highly stigmatized (WHO, 2019). It is a disease of antiquity, having been referenced several times in the Bible. The first recorded incidence of the disease was in 600 BCE (Elsayed et al., 2015). Hansen’s disease is the world’s second

11 most prevalent mycobacterium infection (Corley et al., 2016). The disease is caused by mycobacterium leprae and is transmitted via respiratory droplet or aerosol and nasal secretions. It may also be transmitted by the shedding of skin over long periods of time.

Armadillos, a new world mammal not found in Africa, carries the organism in their foot pads and nasal mucosa. Pandhi and Chhabra (2013) posited there are certain genetic markers for leprosy reactions in skin and nerves as well as resistance or susceptibility to the disease. It is believed that 95% of humans are naturally immune; however, worldwide there were 181,941 cases reported in 2012 (Elsayed et al., 2015). Though not highly contagious, those infected have been ostracized by society since the disease’s ancient beginnings. WHO (2019) considers the disease eradicable, but the byproduct of this stigmatizing condition is low self-reporting, resulting in lack of or delay in treatment. The

Ugandan National Leprosy Registry has reported an increase in leprosy, with the majority of new cases originating in the Busoga region (Walukamba, 2010). In 2013, WHO reported only 342 cases in Uganda, while Ugandan Health Minister Ondoa reported that at least 400 new cases are registered annually (Ayebazibwe, 2013). A 2012-2016 study reported 1,240 new cases, which highlights the inaccuracy of reported cases of leprosy in

Uganda (Aceng et al., 2019).

Stigma Associated with Hansen’s Disease and Community Characteristics

Hansen’s disease is a highly stigmatized condition (Poestges, 2011). In Biblical times, individuals diagnosed with leprosy were called “unclean,” wore a garment with a mark of leprosy on it, and were condemned to live outside the camp (Lev 12:45-46 New

American Standard). The word stigma refers to a personal attribute that identifies the person as “abnormal” and excluded from “normal society” (Lusli et al., 2015, p. 1). Fife

12 and Wright (2000) identified three elements that are associated with stigma: blaming the person for the illness, the perceived risk the disease poses to others, and the threat that the illness may adversely affect one’s competence. A qualitative study in Indonesia consisting of interviews and focus groups suggested a difference between the groups of individuals affected by Hansen’s disease and individuals affected by other disabilities

(Lusli et al., 2015). Persons affected by other disabilities reported that though they were disabled, they did not view themselves as sick, while those affected with Hansen’s disease, even after being declared cured, viewed themselves as sick. Both groups reported feelings of rejection and described the hardships of finding employment due to the perception of others that they were sick. Both groups reported that they preferred to avoid people as a means of protecting themselves from negative comments. The two groups reported differences in social relationships. While those affected by other disabilities experienced decreased quality of relationships, those with Hansen’s disease reported that the disease may cause termination of all social encounters. They also reported that their social relationships tended to be with others with the same diagnosis and medical professionals.

Poestges (2011) identified a relationship between stigma and community membership. Though those afflicted with leprosy are ostracized by the outside world, it is that same stigma that brought the leper colony community together. The community members established their own social structure and control over social inclusion and exclusion within the colony, resulting in a strong sense of solidarity within the community. The culture of the colony is unique to the colony. While the western worldview sees autonomy and independence as important and as life goals, the members

13 of the leper colony are more interested in creating and maintaining their social world.

They see themselves as kings and the colony as a kingdom. Members decide who are granted membership and who are denied. The members developed their own governing board and election procedures. Though re-entry into general society would appear to be desirable, this is not the desire of the community members. People who grow up in the colony, though not diagnosed with Hansen’s disease, tend to stay in the colony as adults and marry within the colony (Poestges, 2011).

Separation from General Society

One of the most commonly known geographic sites established as leper colonies is in Hawaii. In 1866, individuals diagnosed with leprosy in Hawaii were exiled to the island of Moloka’i. Individuals were compelled to leave their homes, families, and employments, and never allowed to return. Spouses of exiled individuals were awarded automatic divorces. In 1865, the Kingdom of Hawai‘i criminalized leprosy when it enacted legislation to prevent the spread of leprosy. Those suspected of having the disease were arrested. Rather than medical personnel, government officials and undercover spies were empowered to identify the infected; however, half of the 12,000 people identified were determined by physicians not to be infected. Over time thousands were imprisoned for decades before it was determined they were not infected. The peninsula of Kalaupapa on the north shore of Moloka’i became a natural prison for patients. Towering mountains on both sides of the peninsula made it impossible to escape by any means other than boat. Many died from dysentery and influenza as a result of inadequate food, housing, and healthcare. Interestingly, prior to people being forced into exile, family members would accompany their loved ones to Moloka’i and were unafraid

14 of exposure to the disease. Fear of the disease appeared after people were torn from their homes and separated from general society. Not only were patients exiled but family members left behind were shunned based on fear that they too may be infected. The disease became categorized as the “separating sickness” (Harris & Matusitz, 2016, p.

304). After a treatment was discovered, those returning disease-free were shunned based on the old stigma (Harris & Matusitz, 2016).

The first leper colony in Uganda was established in 1930, housing 25 female children, two female teachers, two medical assistants, and one female missionary. The site was located in Kumi in eastern Uganda near Mbale. Within six months the facility came to be known as Kumi Children’s Leper Home and was occupied by 144 children.

Vongsathorn (2012) identified three justifications for the designation of the first leper settlement (colony) intended for children. Medically, it was believed at the time that children were more susceptible to leprosy but also more treatable due to the nature of the disease sequelae occurring over time. Socially, the colonial government and the missionaries deemed that if the children were separated from their “primitive parents”

(Vongsathorn, 2015, p. 55) they would be perfect targets for a “civilizing mission”

(Vongsathorn, 2015, p. 55). The British missionaries explained primitive as being

“ignorant and uncivilized” (Vongsathorn, 2015, p. 58). The civilizing missions were explained to be “order, discipline, Christianity and education for subservient citizenship in the British Empire” (Vongsathorn, 2015, p. 58). Financially, children were also attractive and profitable when soliciting financial support through leprosy hospital fundraising efforts in Europe.

15 The Kumi settlement was established for four reasons: medical, social, financial, and evangelical. Dr. Claire Aveling Wiggins, a retired medical officer and missionary with the British Anglican Church Missionary Society (CMS), began his work by treating leper patients as outpatients. However, he claimed it to be inefficient as the children’s living conditions were too poor, parents were apt to not bring the children for treatment due to the distance, and the parents lacked the intelligence to understand the necessity for regular visits or the persistence to maintain weekly injections. Prior to the removal of people with leprosy from their homes, they were viewed as only having symptoms and were not identified as lepers by their families and neighbors. Local chiefs advised Dr.

Wiggins that he would get more children if he treated them as inpatients and provided a school. Coinciding with the chiefs’ directions was an offer from the charitable organization, Mission to Lepers, to fund the establishment of a settlement, although it advised it would be easier to raise funds for children rather than adults. Dr. Wiggins seized the opportunity with the support of the Church Missionary Society and began plans for the settlement. The missionaries saw traditional Ugandan society as primitive and believed that raising children away from their parents would allow for an ideal setting to raise the children in a civilized society. There were negotiations between the

Church Missionary Society and the parents; parents sending their children to live in the mission would be providing them the opportunity for education that the family otherwise may not have been able to financially support. Children who were not cured were transferred to nearby adult settlements (Vongasthorn, 2015).

The Kumi Hospital was not to be the only leprosy settlement established in colonial times. Four large settlements were established between 1927 and 1934

16 (Vongsathorn, 2012). The settlements were projects of the Church Missionary Society, not the government; however, several of the missionaries working in the settlements were also colonial medical officers. Not unlike the Hawaiian settlement at Moloka’i, a settlement was established on the Ugandan island of Bwama in Lake Bunyonyi. The settlement covered one square mile and was home to more 700 people in 1939. Two smaller settlements were established in Nyenga in 1932 and Buluba in 1934. Currently,

Buluba Hospital no longer solely treats leprosy but is a general hospital. Buluba is located near Jinja and is in the area of this research study. The Ugandan Herald carried an article in 1933 that spelled out the priorities for the development of the settlements:

This leper colony was formed mainly with three ideas and briefly there are:

To protect the general public from infected people,

To relieve the suffering of the lepers themselves, and

To cause arrest of the disease among children by treatment so they can live useful

lives. (Vongsathorn, 2012, p. 546)

Though the settlements received financial support from both the church and the colonial government initially, since Uganda’s independence, that support has decreased significantly as a result of changes in governments, wars, and decreased funding overseas

(Vongasthorn, 2015).

Purpose of the Study

The purpose of this study was to give voice to an underserved and vulnerable community in order to advocate for their health priorities. The first study aim was to assist a community in Uganda to identify health priorities. The second study aim was to explore the use of photovoice in a qualitative community-based participatory research

17 study as a means of self-advocacy. Finally, the third study aim was to help the Ugandan community create a vehicle to disseminate their stories as a means to educate others with similar health priorities and to bring awareness to policymakers.

Research Questions

The research questions that guided this study were:

1. What are the community’s strengths and resources identified by the

community?

2. What are the community health challenges identified by the community?

3. What does the community define as their top priority for health promotion?

4. How can photovoice be used as a vehicle to gather information by the

community to advocate for themselves?

Researcher’s Perspective and Conceptual Definitions

In my experiences of annual visits to the same community in Uganda for eight years, I have witnessed the development of a successful community health partner program in Maga Maga, a trading center serving as the central headquarters for teams offering support to surrounding villages. Despite the success of the program in the larger community, there has been little observed self-advocacy and community empowerment efforts in the communities primarily populated by residents infected with Hansen’s disease and impacted by other health conditions.

The grand theory providing an overarching framework for this study was

Leininger’s culture care diversity and universality theory (Leininger & McFarland, 2006).

Leininger developed the culture care theory in the mid-1950s as a clinical mental health specialist in a child guidance center for children of diverse cultures (Leininger &

18 McFarland, 2006). Leininger recognized that the difference in cultures impacted the care of the children, and culture played a major role in healing and caring processes

(Leininger & McFarland, 2006). Leininger began studying culture and care in the early

1960s and discovered the close relationship between culture and care phenomena. The theorist brought culture and care together, culminating in the culture care diversity and universality theory (Leininger & McFarland, 2006). Leininger continued to develop the theory for more than 50 years. McFarland began writing with Leininger in 2002, further developing the theory. Culture care is a broad, holistic, and universal theory that guides the discovery of cultural lifeways, beliefs, values, and practices that ultimately enable the nurse or community health partner to assist those of diverse cultures (Leininger &

McFarland, 2006). Leininger and McFarland (2006) recognized caring as more than interactions and as having significant cultural perspectives in protection, respect, and presence.

The middle range theory guiding this study, the community nursing practice model (CNPM; Parker et al., 2020) provided a theoretical framework for working with and empowering communities. This model has been used in communities in the United

States, Uganda, Haiti, and Thailand. The CNPM is grounded in caring science. The foundation of the model is based on three crucial values: (a) persons are respected, (b) persons are caring and caring is understood as the essence of nursing, and (c) persons are whole and always connected with one another in families and communities (Parker et al.,

2020, p. 436). The model also recognizes the importance of access, essentiality, community participation, empowerment, and intersectoral collaboration. The model uses inquiry group methods for assessment and evaluation. As with the cultural humility

19 concept, the CNPM advocates that the nurse take a humble stance and respect the individual or the community as experts in their own care. The nurse must be open and willing to learn. It is the individual who identifies priorities and needs for daily life and who is empowered by the awareness of choices, by making the choices, and by living with those choices. The inquiry group method relies on full participation of the individual or community. The CNPM’s core values of respect, caring, and connectedness and its use of inquiry group strategies set the framework for CBPR using photovoice.

The framework for this study was grounded in culture care diversity and universality theory (Leininger & McFarland, 2006) as the overarching world view that culture impacts healing. If one is to care for those from other cultures, one must enter their world and discover their lifeways, values, beliefs, and health practices. The CNPM

(Parker et al., 2020) provided the structural basis for this study with its emphasis on respect, caring, connectedness, and use of inquiry groups. Cultural humility and its attributes of self-reflection, active listening, partnership, and connectedness, along with cultural safety with its emphasis on understanding the historical, political, economic, social factors, and implications, contributed to this CBPR approach using photovoice as a strategy.

Significance of This Study

The significance of this study was that it demonstrated that CBPR with photovoice can be used as a vehicle for assisting underserved and vulnerable communities to identify their health priorities and to find solutions to those concerns.

20 Chapter Summary

Uganda has a complex history steeped in civil war, colonialism, and oppression.

The country faces economic, political, social, and health challenges. Decades under colonial rule provided the country with paternalist management with limited preparation to assume responsibility and accountability once independent. In post-colonial Uganda, there are remnants of the attitudes of an oppressed people. This researcher has observed women and children who bow upon greeting men or older women, and also has observed that Ugandans agree with everything those seen as authority are saying and spend much of their conversations flattering those they see as authority, including guests from other nations. Compounded with the ramifications of a post-colonial Uganda is stigma and separation experienced by Ugandans living in leper colonies. Colonialism, stigma, and isolation have profoundly influenced this population. As in the Hawaiian colony on

Moloka’i, the residents have been separated from their families and general society based on pathology. The culture care diversity and universality grand nursing theory and the

CNPM provided the framework for this research study that involved the community from beginning to end, assisting the community in identifying their own strengths and challenges, in deciding what was most important to the community, and in empowering them to develop an action plan.

CHAPTER 2. LITERATURE REVIEW

Introduction

This chapter begins with definition of terms, followed by a review the theoretical and empirical literature related to the phenomenon of interest, community empowerment.

A discussion of the gap in literature and a linkage to caring science completes this chapter.

Definition of Terms

The concepts of cultural humility, cultural safety, and community empowerment, important underpinnings to this study, are explored in the following sections.

Cultural Humility

Cultural humility is a lifelong process of dynamic self-reflection and examination of bias (Tervalon & Murray-Garcia, 1998). Cultural humility also involves active listening, partnership, and connecting with the community. The three focus areas of cultural humility are (a) understanding social determinants of health and inequities, (b) attitudes of stereotyping and bias, as well as power and privilege (Ross, 2010; Tervalon

& Murray-Garcia, 1998), and (c) skills. Nonhierarchical communication and recognition of power imbalances as well as shared decision-making are important skills to develop when entering a community with a sense of cultural humility (Ross, 2010).

The following is an example of the consequences of non-recognition of power imbalances as well as inactive listening when engaging with a community not of one’s own culture:

Jajja Nabalungi (fictitious name) suffered from Hansen’s disease. She had nubs where her fingers and toes once were. The mosquito net surrounding her sleeping cot was riddled with holes. Jajja Nabalungi explained that during the night rats entered her hut, chewed holes in the net, and gnawed on her heels. Because of the leprosy she did not feel the rats at her feet, but in the morning awakened with bloody heels. An outsider suggested she get a cat. The community tried but the rats were bigger than the cats and the cats ran away. Once again, an outsider offered a solution by suggesting rat poison.

Since many of the villagers have impaired vision, rat poison would be dangerous as they may mistake the powder for grain. When the outsider stopped trying to solve the problem and listened to the community members who shared that Indocin capsules kill rats. The next day 100 Indocin capsules for $4 USD were purchased.

Self-reflection is the first step in the process of developing cultural humility. One must access and recognize memories and impressions of past experiences, preconceived ideas, or lessons learned during one’s upbringing. Self-reflection is the active practice of examining one’s biases and assumptions. Akin to reflexivity in qualitative research, the practice of exploring personal beliefs provides an awareness of potential judgments during research (Yeager & Bauer-Wu, 2013). Self-reflection can be done by journaling, bracketing notes (Sanders, 2003), or dialogue. The nurse or community health partner must first discover and acknowledge their own conscious and unconscious assumptions and ideas (Ross, 2010). Chen et al. (2009) posited that beliefs and biases have the potential to influence decisions as to whether one acts or does not act. A component of self-reflection is to reflect on one’s own family values, upbringing, and tolerable versus intolerable behaviors (Chen et al., 2009). Yeager and Bauer-Wu (2013) proposed that one

must not only examine one’s personal beliefs about and experiences with culture, but one must examine one’s beliefs from a professional background view. Nurses educated in

North America may be influenced by traditional western medical views that tend to focus mainly on interventions aimed at cures, while focusing less on spiritual and psychosocial aspects of care. Western views tend to describe normal as the White, English-speaking,

Judeo-Christian, and heterosexual individual (Yeager & Bauer-Wu, 2013). Implied degree of power and privilege attributed to healthcare providers and the possible impact on practice and interactions with the community are other areas warranting self-reflection

(Yeager & Bauer-Wu, 2013). Ray’s (2016) transcultural caring dynamics in nursing healthcare theory calls for self-reflection, noting that each individual is unique. Self- reflection may facilitate growth in the individual and bring to light the meaning of one’s cultural worldview by exploring one’s values, beliefs, attitudes, and lived experiences

(Leininger & McFarland, 2006).

The first step, self-reflection, involves looking deep within oneself. The second step ventures outside oneself with one’s ears to listen, eyes to read body language, and soul to sense emotions (Chang et al., 2012). The nurse learns from the community by actively and empathically listening as opposed to making judgments and stereotypical assumptions. The nurse becomes the student (Ross, 2010). Bodie (2011) described active- empathic listening as the listener intentionally and actively engaging in the discussion and who is perceived doing so by the speaker. According to Bodie, active-empathic listening consists of three dimensions: sensing, processing information, and response.

Bodie described sensing as not only hearing the actual spoken words but also being aware of the relational content and emotional needs of the other (Bodie, 2011). Chang et al.

(2012) identified this process as listening with the soul to witness feelings and emotions.

During the processing stage of active-empathic listening, the hearer recalls comments made by the speaker, asks for clarification, and integrates parts of the speaker’s message into the conversation. The response phrase occurs when the listener asks questions or paraphrases and uses nonverbal signals such as a nod of the head (Bodie, 2011).

Reaching out a hand in partnership is the next step in cultural humility. Stepping further outside oneself not only to listen to the other but to join the other in a common goal in an agreement to work together is partnership. Ross (2010), an associate professor of community development and planning at Clarke University in Worchester,

Massachusetts, developed a two-course sequence within a graduate program to facilitate students’ development of cultural humility in a community-based participatory research study. According to Ross, the community health partner must develop respectful partnerships with the community, benefiting both parties and each individual through health advocacy activities. The key to cultural humility is the ability to engage in participatory decision-making with community partners. Participatory partnership is an agreement between parties to cooperate in order to further their mutual interests (Ross,

2010). An open and trusting relationship is crucial to partnering. Watson (2006) described a caring relationship as being authentic and allowing the other to explore options. Watson further described a caring relationship as supporting the other’s decision to make the best choice for themselves at any given time. Leininger maintained that humans were created to help other human beings (Leininger & McFarland, 2006), while

Ray’s (2016) transcultural caring dynamics in nursing and healthcare theory sets forth as an assumption that caring is the process of relationship and interconnectedness.

The next step in the lifelong process of cultural humility is being connected with the community, symbolized by the visual image of hearts that interconnect. Rovai (2002) identified characteristics of a sense of community as feelings of connectedness, cohesion, spirit, trust, and interdependence. Lowe (2002) recognized being connected as a theme in the Cherokee self-reliance theory. Participants in Lowe’s study explained that being connected to family and community helped the individual to not lose their way. Lowe explained that interdependence within the community is of greater value than independence. Being connected means community members care for their personal selves and each other. The assumption was that each member has gifts and talents to contribute to the community with which one is connected. The Native American nurse recognizes a patient as more than an individual but as a part of one’s greater self, family, community, and tribe. The family and community are considered in planning the patient’s care, and the patient is encouraged to use them as resources. Throughout the nurse-patient encounter, the nurse remains nonjudgmental and respectful of the patient’s connectedness to others (Lowe, 2002).

In preparing to enter a community of another culture with a sense of cultural humility, one must recognize that there is potential for misunderstandings or insults between different cultures. These misunderstandings are often precipitated by different perceptions of concepts as described by Corbett and Fikkert (2014). Africa, Asia, and

Latin America are often referred to as the majority world because 80% of the world’s population live in those areas (Corbett & Fikkert, 2014).

The cultures of the majority world view the concepts of time, self, saving face, degree of directedness, locus of control, and power distance differently from North

American and European cultures. To the majority world cultures, time is polychronic and limitless, relationships are more important than time, and there will always be more time to accomplish tasks. To North Americans and Europeans, time is a limited resource that must be used efficiently, demonstrated by punctuality as well as getting as much done as possible within a given period (Corbett & Fikkert, 2014).

The cultures of the majority world view self as collectivist, being part of a community, and having interdependence with the community. In North America and

Europe, the view of self is individualistic, unique, and independent (Corbett & Fikkert,

2014).

The cultures of the majority world are high face cultures: Protecting people’s honor is of paramount importance. Indirect communication is preferable to being direct and open if in so doing will result in embarrassment to the other. North America and

Europe are low face cultures: Direct open communication is more important than not embarrassing the other (Corbett & Fikkert, 2014).

In the cultures of the majority world, there is the belief in an external locus of control. Outside forces influence life and are difficult to overcome so one must accept it as they cannot be easily altered. In North American and Europe there is a belief in internal locus of control (Corbett & Fikkert, 2014). Persons are believed to control their own lives; all problems can be and should be overcome.

According to Corbett and Fikkert (2014), the societies of the majority world are high-power distance cultures. Authority figures are responsible for those under their authority and are not to be challenged. North American and European societies are low- power distance cultures. People under authority are free to challenge authority and

participate in decision-making (Corbett & Fikkert, 2014). An awareness of the cultural differences in perceptions of time, self, face, locus of control, and power distance reduces the potential for misunderstandings and hurt feelings and aids in the process of developing cultural humility.

Cultural Safety

Israel et al. (2013) explained that cultural safety gives voice to the community, and community members may or may not participate. Cultural safety arose out of the need to recognize that political, social, economic, and historical factors may have impacted relationships and power imbalances. Cultural safety was first developed in the

1980s in New Zealand as nurses recognized the need to address social, economic, political, and historical issues when caring for the Maori people (Papps & Ramsden,

1996). The topic was incorporated into New Zealand’s nursing education curriculum in

1992. Although the cultural safety theory originated in New Zealand, it has expanded to all multicultural groups. Cultural safety is a means of caring for diverse communities in a manner that eliminates power and authority barriers between the community and the nurse and instead encourages equality (De & Richardson, 2008). The community determines whether or not the care they receive is culturally safe.

Doutrich et al. (2014) identified five emerging themes related to the concept of cultural safety. The first theme is that self-reflection is key, followed by knowing who you are and where you come from. Walk alongside arose as the next theme, referring to developing relationships and participatory partnerships with the community. The fourth theme is the commitment to inspire the desire to get it right. The last theme is the importance of cultural safety as it continues to evolve over time. The process of self-

reflection includes looking at one’s own historical roots of broken treatises and being aware of one’s own genocidal history. For the nurse from the United States, this would entail exploring historical trauma and violence such as slavery and our neocolonial history of broken treaties with the Native Americans and Native Alaskans. Equipped with an understanding of historical trauma and positions, whether as perpetrators or injured, we perhaps can cease to cast judgment on the community or on ourselves. Cultural moments are strategies to de-shame cultural mistakes. There may be times when cultural misunderstandings occur and at the root are cultural assumptions. The strategy of dissecting a cultural moment is to tell the story of the offense and to share the assumption that proved to be detrimental. This process fosters heightened self-awareness (Doutrich et al., 2014).

Cultural safety theory highlights the risk of health professionals unwittingly allowing assumptions and stereotyping into their sphere of practice and relationships with community members. The theory proposes four objectives for the nurse or health professional: (a) self-examination of cultural reality and attitudes, (b) open-mindedness and flexibility, (c) focus on historical factors rather than blaming individuals for their social status, and (d) become educated and self-aware (Taylor, 2017). Taylor (2017) observed two themes related to cultural safety and international partnerships: understanding context and understanding self. Understanding context stresses the crucial importance of understanding past and present cultural and social influences as well as knowledge of the country’s political and social history. When there is history of dominance by outsiders, it is paramount that power imbalances be avoided. There is risk of subconsciously entering a community with an ethnocentric attitude (holding one’s own

belief as the standard for others). Ethnocentric views may disempower, disrespect, and ultimately result in failure of the low-income partner. Understanding self includes examining one’s personal and professional motivations. This is particularly important in areas lacking regulation and governance of nursing practice. The nurse must evaluate her motivations and actions. Like Doutrich et al. (2014), Taylor (2017) identified communication, conflict, and misunderstandings as challenges when practicing in another country. Taylor also recognized differing perspectives as challenges, supporting the assertions by Corbett and Fikkert (2014) that cultures may clash over differences in perspectives related to time, self, face, locus of control, and power distance. A successful approach to partnership is respecting the community ownership of issues (Taylor, 2017) and understanding the historical, economic, political, and social factors impacting the community.

Community Empowerment

At the foundation of empowerment theory is the involvement of the community from start to finish, from planning to implementation to evaluation (Aiyer et al., 2015).

Community empowerment begins with individual empowerment. Kieffer (1984) described empowerment as a developmental process of change. Gutierrez and Lewis

(1999) broke down the intrapersonal and interpersonal process changes into consciousness, confidence, and connection. Changes in consciousness occur when individuals become aware of the impact of power relationships to shape ideas and experiences in a society. A sense of confidence is necessary to affect change. Individuals who feel that they are incapable of certain tasks or behaviors will likely avoid those activities, resulting in a sense of hopelessness. Helping individuals recognize their

strength and ability to impact change can build confidence. This development of self- efficacy can be enhanced by providing opportunities to master new skills, witnessing others in similar circumstances master the skill, encouraging the individual that they are capable of mastering the new skill, and managing levels of anxiety while learning the new skill. Achieving self-efficacy in mastering a new skill requires both individual capacity and social support. Self-efficacy sets the stage for community efficacy:

Individuals with a sense of high efficacy are more likely to join in community efforts for change (Gutierrez & Lewis, 1999). Connection to others in similar situations provides an opportunity for social networking and development of action by joining together for a common goal (Gutierrez & Lewis, 1999).

When individuals come together with others and organizations in joint efforts to implement change, effective community empowerment occurs (Soares et al., 2015).

Changes at the individual, community, and organizational levels impact each other and are linked one to the other (Rappaport, 1987). Community empowerment consists of intracommunity, interactional, and behavioral components (Aiyer et al., 2015).

Intracommunity components are residents’ views and beliefs about trust and the organization of the community. The views are derived from interpersonal relationships and the level of social cohesion in the community. Critical to the intracommunity component are social cohesion, collective efficacy, and a sense of community. These issues are even more crucial in majority world communities that view self as collectivists

(Corbett & Fikkert, 2014).

Social cohesion is the presence of strong social bonds among communities. Social cohesion has been identified as a characteristic of communities known as leper colonies

(Poestges, 2011). Collective efficacy is relative to residents’ beliefs and actions that demonstrate they can work together to achieve goals. Sense of community is a concept that focuses on the individual’s experience in the community. It is related to perceptions, understanding, attitudes, and feelings. Sense of community is representative of interdependency among community members (Aiyer et al., 2015).

Interactional components are social factors required to achieve a feeling of connectedness. Interactional components include social capital and social control. Social capital refers to collective social support and the commitment for the community to help each other when needed. Social control is related to shared norms and expectations for behavior (Aiyer et al., 2015).

Behavioral components are actions taken by the community to influence community outcomes (Aiyer et al., 2015). The components related to community empowerment are readiness, willingness, and capacity to join together to accomplish goals that will benefit the community as a whole. Some examples of collective actions are crime watches (Aiyer et al., 2015). In a developing community, examples of community actions may be coming together as a group to assist community members or asking the community leadership to set rules or codes for borehole or pit latrine maintenance.

Community empowerment calls for an understanding of the structural context and the social processes operating within the community. Positive social interactions and strong social connections are evidence of empowered communities. Community empowerment is present when a community comes together to influence factors affecting their lives, their families, their community and their environment. Though they may not

have control over extrinsic factors, they have the ability, capacity, and resolve to influence those factors in a way that will benefit the community.

Empirical Studies

Community Empowerment

Pratt and James (2009) presented a framework for empowering communities to improve public health in Africa. In this framework, local residents are involved from the beginning of any health promotion project if it is to be successful. Mores and social networks are crucial ingredients in community engagement. Grassroots projects that train local people are recommended. An example of a grassroots effort was a home-based care approach to treating malaria in Uganda (Nsabagasani et al., 2007). Mothers were taught to recognize early malaria symptoms. The children were then taken to local volunteers who were trained to recognize the difference between uncomplicated malaria and severe malaria fevers. Children with severe cases were sent to the nearest health center. Children with noncomplicated cases were given prepackaged chloroquine and sulphadoxine- pyremethamine, known as HOMAPAK. This approach proved effective until 2004 when a resistance to the drugs emerged. Similarly, M. Smith et al. (2004) approached health promotion and disease prevention through sanitation education in South Africa among

Zulu and Xhosa women. Women who were recognized as community leaders were selected as program leaders. Each leader worked with eight women who were taught to be community health educators. The educators conducted workshops in the community.

Each workshop required a minimum attendance of 10 participants. Each participant was to share the information learned with two other families within one week of completing

the workshop. This approach resulted in educating 1,467 community members (M. Smith et al., 2004).

Community-Based Participatory Research

The Community Directed Interventions (CDI, 2010) study group conducted a 3- year experimental study in Cameroon, Nigeria, and Uganda. The study looked at different disease control prevention measures, including malaria preventions. The strategy used for disease prevention was a community-directed intervention. Possible interventions were introduced to the community as well as the suggestion that the community take ownership of the program. The community held several meetings where roles and responsibilities were discussed. The community decided who would provide the intervention, how it would be implemented, and when it would be initiated. They also made decisions as to how progress would be monitored and determined the size of a budget. Once selected by the community, the implementers were trained by health professionals; however, the community directed the project. One intervention project was aimed at malaria prevention. Families were provided with insecticide-treated mosquito nets by the community implementers; the study showed a significant increase in mosquito net use, suggesting that projects driven by an empowered community may be effective.

Photovoice

Catalani and Minkler (2010) conducted a literature review of photovoice participatory research related to public health. The authors used Viswanathan et al.’s

(2004) quality of participation measurement tool to rate the level of community participation at 10 phases of CBPR studies. The phases included research question selection, proposal development, grant fund responsibility, study design, participant

recruitment and retention, measurement instruments and data collection, development and implementation of intervention, interpretation, dissemination, and application. The scale ranged from 1 point for poor participation, 2 for fair participation, and 3 for good participation. The means were used to appoint low, medium, or high participation classes to the studies. Of the 37 articles reviewed by Catalani and Minkler (2010), 30% were ranked as low participation, representing minimum interaction between participants and researchers or other participants. Medium participation was found in 43% of the articles; these studies were designed, initiated, and managed by the researcher. Communities were involved in the photography, photo selection, discussion, conceptualizing, storytelling, codifying, and dissemination. Only 27% of the studies rated high participation levels: The community was involved from the inception. High participation levels tended to be based on longer standing partnerships. Outcome evaluations were identified by 31% of the articles. The observed outcomes were enhanced community participation and advocacy, increased understanding of community needs and assets, and increased individual empowerment. Interestingly, 35% of articles that did not report action as an outcome tended to be the low participation studies nor did the low participation studies report dissemination through photo exhibits or any other venue. The low participation studies reported no enhanced empowerment, and one study found that two years after the study, the participants were found to be disempowered, had increased in despondency and seclusion, and had disengaged from their communities. CBPR studies using photovoice have been found to provide rich data when used in developing countries. Photovoice is flexible and easily adaptable when used in studies involving language barriers and participants with disabilities. When medium to high community participation is

represented, outcomes have been shown to be self-advocacy and community empowerment (Catalani & Minkler, 2010).

Cooper and Yarbrough (2010) conducted a CBPR study using photovoice in rural

Guatemala with an objective of gaining an understanding of the health issues as perceived by the community in that area. The participants were comadronas (traditional birth attendants) living and working in rural highland Guatemalan villages. The villages are agricultural and the communities live in poverty, with an annual per capita income of

$2,130 USD. Like Uganda, Guatemala was ruled by Europeans for many years and in more recent history has suffered the effects of a 38-year civil war (1958-1996).

The comadronas are women identified by the community for their knowledge, experience, and skills in prenatal care, the delivery process, and care of the mother and infant postnatally. Their skills are largely learned from older female relatives, with little or no formal training. Cooper and Yarbrough (2010) sought to explore the perspectives of comadronas on general health issues rather than focusing solely on maternal child aspects.

The researchers also sought to assess the use of the photovoice strategy in this setting, while the third aim was to evaluate the nature of the data arising from each distinct phase of the study. The first phase of the study was the “tell me” phase, conducted in a traditional focus group session. The second phase of the study was the

“show me” phase; it used photovoice and consisted of a series of photographs obtained by the participants. The first phase “tell me” group consisted of 15 participants, about half of who gave consent by their mark due to low literacy levels. During the traditional focus group session, the “tell me” phase, participants were asked to prioritize what they

perceived as the most problematic health condition. They were also asked about the overall health of women and children in their villages as well as issues related to pregnancy and childbirth; lastly the participants were asked to describe in one or two sentences what others should know about health in their villages.

Six of the 15 participants were selected to participate in the photography phase.

Instructions were provided in the use of the 35 mm disposable cameras and in obtaining written consent when photographing persons; participants were instructed not to photograph scenes that may pose a potential threat to themselves, to the person to be photographed, or to the community. The participants were asked to take photographs that represented health issues in their community. The Phase 2 focus group sessions, the

“show me” phase, were conducted four months later. Of the 11 returning participants, all six photographing participants returned for the session. Photographers shared their photos with an explanation of the depiction. The group was asked if the depiction was a concern in their village, whether they wanted to say anything about the picture, and whether it brings to mind anything else. The data from Phase 1, “tell me,” indicated that illnesses were presented as symptoms such as diarrhea or headache and attributed to disease such as the flu. One participant acknowledged that lack of clean water could be a contributing factor, and all participants agreed upon hearing the suggestion. The photographs in Phase

2, “show me,” stimulated discussions about child work and grandparents caring for grandchildren, along with sanitation issues concerning toileting and water. The researchers found that the photographs in Phase 2 “show me” prompted richer, more reflective, and more contemplative discussion and data than the “tell me” Phase 1 group

(Cooper & Yarbrough, 2010).

Walker and Early (2010) explored the ecological factors that impeded or promoted health among orphaned children in Sierra Leone as seen by NGO caregivers.

Ranked 177th of 177 least developed countries in the world, Sierra Leone’s economic, social, environmental, and health-related conditions pose a significant challenge to the nation’s more than 300,000 orphaned children. Not unlike Uganda, Sierra Leone was a

British colony, and after winning independence, was ravaged by a 10-year civil war

(1991-2001). Also similar to Uganda, children in Sierra Leone were abducted during the civil war and forced to witness and participate in war crimes. Children not abducted faced challenges of inadequate nutrition, separations from families, and deaths of parents as well as of siblings. Sierra Leone today struggles with the issues of lack of clean water and low literacy rate as well as the world’s highest child mortality rate. The orphaned children receive no support from the government and rely on NGOs for assistance.

The purposive sample for Walker and Early’s (2010) study consisted of 10 NGO workers. As in the Cooper and Yarbrough (2010) study, participants were taught to use cameras, though digital cameras were used in this study, and to obtain verbal or written consent to be photographed (Walker & Early, 2010). Contrary to the Cooper and

Yarbrough (2010) study, the Walker and Early (2010) study did not conduct a traditional focus group prior to the photography exercise. After seven days of photography, the participants met to participate in the SHOW’D method of data collection (Walker &

Early, 2010). Participants displayed their photographs and were asked the following questions:

What do you see here?

What is really happening here?

How does this relate to our lives?

Why does this problem or strength exist?

What can we do about it? (Walker & Early, 2010, p. 4)

Each participant then identified common themes that emerged from their photographs. The study revealed that the common theme among the photographs was extreme poverty. Subthemes that emerged as being linked to extreme poverty were poor sanitation; overcrowding; and limited access to education, medical services, food, water, and adequate housing. The issues of child labor, abandonment, and neglect also emerged

(Walker & Early, 2010). As a result of this study, the NGO altered their services by engaging in community empowerment. Rather than addressing the needs of only the children living in their facilities, they are now reaching out into the community to develop community programs. The group affirmed that the solutions to the country’s problems are the Sierra Leoneans themselves. The NGO committed to establish a platform for the community members to advocate and share ideas (Walker & Early,

2010).

Fournier et al. (2014) explored considerations to be addressed when conducting participatory action research using photovoice with children in sub-Saharan Africa. This exploratory study was conducted with 13 participants between the ages of 12 to 18 years of age. The participants were orphaned, living with HIV, and residing in a group home in western Uganda. The aim was to include the children in exploring their experiences using photovoice to share their stories, identify their issues, and suggest their own solutions. Of the 17 million children living in Uganda, it is estimated that 2.5 million are considered orphans (having lost a father, mother, or both parents).

Data were collected through eight meetings, divided into five phases; training sessions, devising themes, taking pictures, discussing photos, and display planning. As in the previous two studies, the training sessions consisted of lessons in care of the cameras, taking photographs, obtaining consents, safety concerns, and ethical issues when taking pictures. During the devising themes phase, children were given a work sheet called

“What matters to me.” The children were asked to write down what they thought were community strengths, what needed to change, and what themes they thought they would like to photograph. The children, accompanied by adults, took photographs during two afternoon sessions. The participants then met as a focus groups using Freire’s (1972) three-step participatory analysis process: selecting, contextualizing, and codifying.

During the first session, the participants used their “What matters to me” worksheet to explore themes. In session 2 the participants shared their first group of photos and identified their meanings. During session 3, themes were clarified. In session

4 participants shared their second group of photos and discussed their meanings. The

SHOW’D method was adapted for flexibility as the researchers were working with children. In the final session participants decided which photos, if any, would be displayed; who would be invited to view the display; and in what setting the photos would be displayed. The participants then wrote stories to accompany the photos and pasted both pictures and stories on a display board. Each participant spoke to the selected audience in a celebratory setting.

Data were analyzed at three levels: the SHOW’D framework for telling the stories, a matrix methodology for analyzing transcripts and field notes, and finally a return to community members to confirm the emergent themes. The researchers identified

six outcomes of using photovoice. The first outcome was that photovoice set the stage for change by giving the children the opportunity to identify which photos were most important to them and how they would tell their story. Second, the children learned to use the cameras and felt they had benefited from this new skill. Third, the children were empowered by their acquisition of a new skill and requested more training. The fourth outcome was that the children also developed new skills in public speaking by presenting their photos and the stories during the display presentation. The fifth outcome was that the children, at times, seemed to not know how to answer the questions, leaving researchers questioning whether the children felt they had internal or external locus of control. The last outcome was that the study indirectly advocated for individual mental health counseling. As a result of the study, the group home added another counselor to provide additional services in addition to the group therapy already provided (Fournier et al., 2014).

Summary of the Literature

The two studies pertaining to community empowerment in African settings demonstrated not only the effectiveness of grassroots health promotion projects but the capacity of those projects to expand through a community effort. In the Ugandan

HOMAPAK (Nsabagasani et al., 2007) study, the project started with mothers and local volunteers. The sanitation project (Smith et al., 2004) ultimately reached over 1,400 community members. This was accomplished by an outgrowth of the original eight community leaders teaching 10 participants who shared the education with other community members, indicating that community members may be more open to learning from their peers in smaller settings or even one on one settings rather than attending large

conferences taught by a professional from outside the community. The CDI (2010) study pertaining to CBPR was also conducted in three African countries including Uganda.

This community directed project demonstrated the effectiveness of a project started, designed, and implemented by the community.

Photovoice has been described as a qualitative method within CBPR (Israel et al.,

2013) Photovoice was originally implemented in a study by Wang and Burris (1997) in

China. Photovoice presented an opportunity to reach policymakers by giving voice to their stories through photography. Hergenrather et al. (2009) have described photovoice as being grounded in feminist theory, as being constructivist, and as documentary photography. Feminist theory considers role expectations and power differences related to gender (Turner & Maschi, 2015). The foundation of feminist theory is that the inferior status assigned to women is resultant of social inequality shaped by political, economic, and social issues. The theory posits that women should have equal access to power.

Feminism first emerged in the late 19th century in Europe and the United States, dealing with women’s right to vote (Turner & Maschi, 2015). With the right to vote, women had a voice in issues that related to their lives. Within the community, feminist theory sets the stage for women to have a voice in things that affect their lives and their families’ lives.

Congruent with feminist theory, the community is empowered through voice, language, and history from a constructivist lens; the community learns through an interactive process of developing and constructing meanings out of their experiences. Documentary photography enables the community to demonstrate a visual portrayal of social issues

(Hergenrather et al., 2009). The benefit to using photovoice is the visual portrayal of participants’ experiences and shared knowledge (Nykiforuk et al., 2011). For researchers,

the use of photographs can stimulate dialogue and provide rich data. Another benefit is the flexibility of the process that is adaptable to different needs of the community.

Photovoice also provides a forum for decision makers to see the healthcare issues in a community (Nykiforuk et al., 2011). The challenges of photovoice are ethical issues and issues related to rigorous conduct of research. The assumption that the research will always result in change is not always realized. Other challenges are engaging decision makers to participate in the process, sorting and analyzing a large amount of data, and ensuring that photographs are displayed to accurately present the participants’ most important issues (Nykiforuk et al., 2011). In the current study, the participants were advised that the process would not result in change, but change would be contingent upon the community’s willingness to develop and implement action plans. The community chairperson and vice chairperson, both decision makers for the local community, participated.

Of the four of the studies concerning photovoice, two were conducted in African countries, including Uganda (Fournier et al., 2014; Walker & Early, 2010). Two of the three studies included focus groups prior to the photography phase. These focus groups served to assist participants in identifying themes to guide them in the selection of images that would be photographed (Cooper & Yarbrough, 2010; Fournier et al., 2014). The

Cooper and Yarbrough (2010) study conducted their focus groups with two different groups. The first group of 15 participants met prior to the photography phase and utilized a “tell me” process for discussing health issues as perceived by the community. The second group returned four months after the photography phase. Six of the original 15 participants returned for the “show me” phase in which photographs were used to explore

the health issues. The researchers found that the use of photographs provided richer and more reflective data. Walker and Early (2010) did not conduct a focus group prior to the photography phase, but participants met immediately after their seven days of photography. Walker and Early also used the SHOW’D process for analysis with the participants. In the Fournier et al. (2014) study conducted in Uganda, participants used the “What matters to me” work sheet to assist them in selecting themes for photography.

Like the Walker and Early (2010) study, participants met immediately after the photography session. Fournier et al. (2014) also used the SHOW’D process for data analysis with the participants. A common theme among all three studies was poverty.

While the studies produced additional benefits such as opportunities for the participants to learn photography, public speaking, and improving leadership skills, the Fournier study found that the participants at times did not know how to answer the questions. This raised the question: Did the children feel they had internal or external locus of control?

The two African studies (Fournier et al., 2014; Walker & Early, 2010) resulted in changes for the communities while the Guatemalan study (Cooper & Yarbrough, 2010) was focused on gathering information. The Ugandan study (Fournier et al., 2014) culminated with the group home’s addition of another counselor to provide additional mental health services. In Sierra Leone, the results culminated with the local NGO committing to establish a community member platform that community members would use to advocate for themselves and share ideas. Community empowerment was recognized in the Sierra Leone study when it became clear to the researchers that the solutions to the country’s problems are Sierra Leoneans, not outside entities (Walker &

Early, 2010).

The Catalini and Minkler (2010) study differed from the three other photovoice studies in that it was a literature review. The results indicated that not all photovoice studies result in high participation, with 30% of the studies reporting low participation.

The study indicated a linkage between participation and sustainability. The low participation studies yielded no enhanced empowerment while the medium to high participation studies resulted in outcomes of self-advocacy and community empowerment.

Gap in Literature

There are studies that addressed community empowerment in defined communities in Uganda, such as children in western Uganda (Fournier et al., 2014) or expectant mothers in Uganda (Musoke et al., 2015). There is, however, a gap regarding research in Ugandan communities appointed for individuals diagnosed with Hansen’s disease. There is also a gap in the literature in long-term sustainability. The Catalani and

Minkler (2010) study followed up with studies two years after completion to determine if there was sustainability, but the data were related to individuals rather than communities.

This researcher conducted a study in which there was medium participation; the researcher initiated and designed the study, determined the purpose, aims, and research questions; and participants were involved from recruitment to data generation, analysis, dissemination, and action planning. A descriptive phenomenological study using CBPR and photovoice in a leper colony in Uganda will add to the gap in literature regarding using this methodology in a purposive sampling of both disabled individuals, some with

Hansen’s disease, and abled individuals. The Walker and Early (2010) study posed the question as to whether the participants had internal or external locus of control. This

study considered issues in which the community can address themselves (internal locus of control) and issues in which they need assistance (external locus of control). For those areas in which there is external locus of control, is the community empowered to influence others or circumstances to achieve their goals? This study also evaluated the use of the picture board, such as in the Fournier et al. (2014) study, as an effective tool for this population to use for self-advocacy. This study also has the capacity to be revisited in the future to determine if the projects implemented by the participants as well as community empowerment were sustainable.

Chapter Summary

This chapter provided definitions of crucial concepts needed to guide a respectful entry into a community different from one’s own: cultural humility and cultural safety

(Israel et al., 2013) and offered literature to support these essential concepts. The concept of community empowerment was defined and explicated in philosophic papers and research studies. The review illuminated the attributes of community empowerment: reliance on trust, cohesiveness, and interdependence, which foster empowerment and self-advocacy among community members. The usefulness of the research methodology of community-based participatory action with photovoice was presented through the review of several studies conducted in Uganda and in other vulnerable communities.

Further, a gap in the literature was discussed, supporting the need for this current study.

CHAPTER 3. METHODOLOGY

Chapter 3 describes the research methodology used in this study including the design, with philosophical foundations of the method; a description of sampling, recruiting, and the setting; data generation and analysis; strategies to promote study rigor; ethical considerations; strengths; and limitations. A detailed account of the process of entering and engaging the community, along with the researcher’s intentional attention to cultural humility and safety, is provided. The group process is offered, beginning with the identification of strengths of the community and then the needs for improvement for themselves, their families, and the community. Table 1 depicts the study’s purpose and aims.

Table 1

Purpose and Study Aims

Purpose Study Aims Give voice to the community to Assist the community to identify healthcare advocate for themselves. priorities. Explore the use of photovoice in qualitative CBPR as a means of self advocacy. Help the community to create a vehicle to disseminate their stories as a means to educate others.

Introduction

A descriptive phenomenological method (Husserl, 1931/2013) using community- based participatory research (CBPR) with photovoice was selected to conduct this study

in a leper colony in Uganda. The CBPR approach has proven to be effective in communities where there is a language barrier or disability, both present in this community. The approach was used to facilitate equalizing power relations between the researcher and the researched. Developing relationships between the researcher and the researched may improve the quality of the research, validity, and community health outcomes (Leung et al., 2004). A CBPR study with residents of a Ugandan leper colony had the potential to assist the community to empower themselves, resulting in improved capacity and development of sustainable health promotion strategies (Jagosh et al., 2012).

Cultural Humility Guiding Entry into the Community

Prior to beginning the study, the researcher prepared to enter the community by practicing the cultural humility process of self-reflection to identify any potential bias related to the population and to prepare for outcomes that may be contrary to belief system. Through journaling, the researcher identified preconceived ideas about the community and put those aside. Throughout the research study, the researcher practiced cultural humility through self-reflection, active listening, and engaging in partnership with the community.

Study Research Design

The study design descriptive phenomenology was influenced by Husserl

(1931/2013), who first published Ideas: Introduction to Pure Phenomenology. The method is qualitative and concerned with the world of persons and acknowledges their awareness as the source of knowledge. The philosophical assumptions a researcher must consider in a qualitative study are axiological, ontological, epistemological, and methodological (Creswell, 2013).

The axiological assumption places the researcher in the study rather than as an observer. Ontological assumptions address the nature of reality: those of the researcher, the participants, and the readers (Creswell, 2013). Since the realities may be understood differently by each party, there may be multiple realities. The epistemological assumptions gather subjective data based on participants’ views. Studies are conducted in the field, where participants live and work. The methodology of qualitative research is inductive, emerging and influenced by the researcher’s experiences while conducting the study. Research is done from the ground up rather than starting from a theory or the researcher’s perspective. These four philosophical assumptions are typically embedded in the interpretive framework of a qualitative study.

The researcher in this study was a part of the study, assuming the role of facilitator. The study was conducted within the community where the participants lived.

There were different realities for different participants at different times; each voice was heard and was reported as data.

Community-Based Participatory Research and Photovoice

CBPR is an approach often used in qualitative research (Cooper & Yarbrough,

2010; Fournier et al., 2014; Musoke et al., 2015; Walker & Early, 2010; Wang & Burris,

1997) because it incorporates the assumptions of descriptive phenomenology while focusing on underlying community action and social change, with the goal of improving the health and well-being of the community. Studies are typically conducted with marginalized communities that require some support for change. Participatory action research is emancipatory, practical, and collaborative, advancing action for change while

assisting communities in overcoming oppression. Current CBPR approaches often include inquiry groups and, in some cases, photovoice.

Photovoice has procedures that are aligned with CBPR: community identification of priority issues, recruitment of participants, data analysis, creation of a community forum, and development and evaluation of action plans. Photovoice has the additional procedures of photovoice training, camera distribution and instruction, and identification and instruction for photo assignments. Participants take photos that represent the issue and then discuss the issue in an inquiry group setting. Data collection is analyzed as in traditional qualitative research, using coding, exploring, formulating, and interpreting themes. Participants validate the themes through discussion and consensus. The study is presented in a community forum that includes community members, leaders, policymakers, and advocates. The process is designed to empower and equip the community to advocate for themselves, reaching policymakers and advocates such as

NGOs and CBOs. The flexibility of photovoice is accommodating for participants who do not speak English, are illiterate, or are disabled (Hergenrather et al., 2009).

While the research methodology employed in this study guided the research processes, the overarching culture care diversity and universality theory (Leininger &

McFarland, 2006) and the middle range theory of the community nursing practice model

(CNPM; Parker et al., 2020) kept the researcher grounded in the purpose of advancing the science of caring in nursing. Leininger’s theory anchored the study in cultural caring, honoring the cultural beliefs, practices, and lifeways of the community members

(Leininger & McFarland, 2006). In congruence with cultural caring, the CNPM guided caring for the members in their community, respecting their personhood and wholeness.

Both caring theories promote research using the qualitative tradition of phenomenology in exploring the experiences of others to develop nursing knowledge. Table 2 illustrates the research steps and processes of this study. Permission from the Florida Atlantic

University Institutional Review Board (FAU IRB) (Appendix A) was obtained prior to the start of the research.

Table 2

Community-Based Participatory Research Steps

Steps Process Identification of Prior to entering the community, the researcher determined the research questions research questions based on the researcher’s knowledge of community. These questions were approved by the FAU IRB. Selection of research The RAs with language skills in English and Soga were assistants (RAs) selected by the researcher from a group of health partners. Selection of The community chairman guided the selection of participants participants by community members. After selection, they agreed to volunteer. Community All participants completed the community assessment as an assessment of inquiry group using the “What Matters to Me” worksheet prior strengths, assets, and to the photography day. Participants identified community concerns strengths, resources, and needed changes, first for themselves, then for their families, and finally for the community. Selection of Using the results of “What Matters to Me” worksheet, all priorities or targets participants grouped together similar priorities that would guide their photography. Development of The number of groups were predetermined by the researcher to research plan and allow for each group to include a research assistant, who data collection assisted with consents and photo release forms. The participants methodologies assigned priorities to each of the six groups; then each participant decided which group they would join based on their interest. The participants selected the time and place to meet to start the photography session.

Steps Process Implementation of The six groups of participants and research assistants walked in data collection and the community and captured photographs of the health priority analysis assigned to their group. All participants were involved with selecting images to photograph; those with hand dexterity took turns using the camera while those who could not use their hands participated in selecting images to be photographed. Each group selected the photographs to be shared with the all participants. In an inquiry group format, different members of each of the six groups explained why the images were photographed. All participants then selected the photographs to be analyzed and placed on a picture board. This was done by displaying the photographs on a screen and all participants deciding by consensus. All participants further generated data using the SHOW’D process to explain why the situation existed, how the situation affected their lives, and what could the community do to improve or resolve the issue. Interpretation of This was done after the community meeting so that the whole findings community was involved in identifying priorities. All participants completed data analysis in an inquiry group. Data were assigned to three clusters: basic needs, safety needs, and social/environmental needs. All participants interpreted the data in an inquiry group. The participants identified impeding and promoting factors that would impact their ability to improve or resolve the issues. Dissemination All participants decided to share their findings with the community. They decided on the location and time for the meeting. The participants invited the community personally. All participants selected six spokespersons to share the findings with the community and to explain the images that were on the picture board. The community offered input and agreed with the findings. The community was divided into 10 groups and provided with a list of the health priorities identified by the participants and RAs. Each group selected the priorities most important to them and sorted them in order of importance. All 10 groups selected access to clean water as their most important priority. Application of All participants completed action plans in an inquiry group. findings to develop Impeding factors were solutions that would require external action plans assistance. Promoting factors were solutions that the community could implement without external assistance. The participants developed action plans to implement solutions on their own and also plans for how they would request assistance.

Training of Research Assistants

The researcher met with research assistants who were recruited from a local NGO for which they function as community health partners. The six research assistants visit

Namagera monthly and are well-known to the community. They are lay people; however, education levels vary. One is a retired physician, another a social worker, another a teacher, another a pastor, and others who have a secondary school education. The research assistants were one male and five females. They all spoke English and Soga.

They were provided with training regarding the background of why the study was being conducted, the goals and aims, step-by-step methodology, and what was to be expected of them over the course of the week. The researcher provided instructions in use of the camera and photography tips. They were given time to practice taking photographs. The consent forms were reviewed, their verbal consent was obtained, then they were advised that they would assist with obtaining verbal consents from the participants and those photographed for the study. Each of the research assistants gave digitally recorded verbal consent and witnessed each other’s forms. Copies were made of the forms and distributed to each assistant.

Setting and Participants

Setting

The setting for this study was Namagera, an agricultural community in the bush

(jungle or forest) in the Mayuge District within the Busoga region of Uganda. Uganda is in sub-Saharan Africa and the climate is warm tropical. The village is remote and near the shore of Lake Victoria. Parts of the village are accessible by automobile, although via uneven dirt roads, and usually take at least an hour to reach. Most of the homes in the

village are beyond the road and must be reached by foot, sometimes at least one-half hour walk through bush and uneven terrain. Many residents live in mud huts with grass roofs and dirt floors. There is no electricity, running water, or sewage systems. The residents use candles at night, fetch water from the borehole or the lake, cook over open fires, and use pit latrines (a deep hole in the ground) for toileting. They grow much of their own food, and there is an area where people sell goods and some food can be purchased there.

The residents are familiar with technology and some have cell phones.

Population

At the time of this study, the community was comprised of 57 individuals diagnosed with leprosy, 7 with other disabilities such as polio or elephantiasis, and 23 considered elderly without leprosy or disability. Of the 57 residents diagnosed with leprosy, 35 are amputees. In total there are 87 adults and 120 children living in the community. Many residents are lacking digits, some are blind, some deaf, some lame and some travel by crawling. Very few have wheelchairs. The wheelchairs they do have are plastic chairs set on bicycle tires. The community members are from hospitals that treat leprosy while others are dropped off by their families. The healthy residents are typically children and grandchildren of the afflicted residents, and they often live together in one dwelling. They often marry within the community and remain in the community with their families. The residents speak Soga and many do not read. The researcher has been visiting the community for eight years as part of local NGO that assists the community, and a trusting relationship has been established. An important component of CBPR is developing trust between the community and the researcher (Israel et al., 2013).

Target Population and Sampling

Participants in this study were residents of Namagera, a community of persons diagnosed with Hansen’s disease or other debilitating conditions in the Busoga region of eastern Uganda. The study participants were a purposive sampling of 12-16 individuals ranging in age from 18 to 80 years old. The number of participants recruited was derived from a review of previous studies conducted in developing countries (Fournier et al.,

2014; Walker & Early, 2010). An attempt was made to select an equal number of males and females to provide a perspective from both genders. To gather different perceptions of health issues, an attempt was made to include participants diagnosed with Hansen’s disease or other debilitating conditions and participants without disease or disability.

Residents under the age of 18 and those with cognitive or mental impairment were excluded. Residents with vision deficits were excluded due to the photography phase of the study.

Entry into the Community and Recruitment

The first step to entering the community required meeting with the community chairperson to request his approval to enter the community. The researcher, along with a

Ugandan interpreter who translated English to Soga and Soga to English, met with the community chairperson and the community secretary. The study was explained in detail, including how many participants, inclusion and exclusion criteria, each day’s objectives, and the amount of time being asked of each participant. The goals of the study were presented, and participant consent forms, the photo release forms, and the “What Matters to Me” photovoice worksheet were shared. The chairperson approved for the community to participate and for the researcher to enter his community. His response, along with the

conversation, was digitally recorded. The researcher asked his preferred method for recruiting participants: to go hut to hut or did he have some names he would like to recommend. The chairperson voiced the importance of community participation and suggested that to achieve the best representation, the community should select their delegates for this study. The chairperson said he would meet with the community first and ask the community to select their representatives. The chairperson held a community meeting and invited the community to select their representatives. The chairperson first met with the community without the researcher present and presented the study. The chairperson advised the nominated residents to meet with the researcher the following day for more details regarding the study. The following day the researcher met with 12 nominated residents. One resident was under the age of 18 and was excluded. There were no residents diagnosed with Hansen’s disease among the nominated group so the researcher requested that the community nominate at least three residents diagnosed with the disease. The researcher then presented the study to the nominated residents. The first day of the study, additional residents arrived to participate in the study and the researcher presented the study to those residents.

The general meeting area within the community was an open grassy area beneath a mango tree. However, to provide privacy and decrease distractions during the training and inquiry group sessions, we were invited to meet at the Doctina Beach Hotel, which is within walking distance from the community. Participants were provided lunch each day of the group sessions. Lunches were typical Ugandan fare; fish, beef, chicken, matoke

(steamed bananas), rice, Irish potatoes, sweet potatoes (white in Uganda), g-nut paste, greens, lettuce and tomatoes, millet, bananas, and soda. This was a feast for a community

who daily live on beans and poscha (a type of corn bread). According to the hotel manager, the meal with a soda was a real treat for the participants. The researcher paid for the meals. Participants were presented with a photo album containing the photographs they took as tokens of appreciation for their participation during the last session of the study. The community chairperson was presented with the cameras to be held for future community use during the community presentation session.

Pre Photography Session

The inquiry group sessions were held in a conference room at the Doctina Beach

Hotel on the shore of Lake Victoria over the course of three and a half days. The pre photography day started at 10 am and ended at 4 pm, while the photography day started at 10 am and ended at 1 pm. The two post-photography days started at 10 am and ended at 4 pm. The community presentation meeting started at 10 am and ended at 12 pm. The participants met once after the community presentation for lunch and the final session, ending at 4 pm.

On the first day of the study it was hot, but the breeze from the lake provided some relief. A generator was used for electrical power. At first there was concern that none of the participants would arrive; then two came right at 10 am and, as is the African way, the others trickled in. Then there was a concern that the whole community would come! They kept coming after the minimum of 12 and then after the maximum of 16. A total of 20 showed, but one decided not to participate, leaving 19. Though the protocol had called for 12-16 participants, the wishes of the community were honored to have these three additional participants in the study. An amendment was approved by the FAU

IRB (Appendix B) to include the 19 participants, three more than the protocol.

The group provided a rich representation of the community, the youngest being

18 years old, then several in their 20s and 30s, and several mothers with their nursing babies and toddlers. The complement of participants was complete with five individuals between the ages of 60-80. There were three diagnosed with Hanson’s disease; some disabled, with missing fingers and toes; some walking with canes, and one young woman had a hip deformity. The three women with Hanson’s disease were older adults; there were also two older men participants. None had visual impairment and all ambulated, though it may be with crutches or a cane. Translation from Soga to English and English to Soga was done by one of the research assistants, a woman in her twenties who recently graduated from university with a degree in social work with special emphasis on persons with disabilities.

Data Generation

The first session began with introductions. The researcher explained informed consent to the participants. Consent was digitally recorded verbal consents and photography release forms signed. An overview of the study aims and questions as well as the agenda for the week was presented. This first session was a brainstorming session with participants to identify themes to be explored. To stimulate conversation, the researcher used a photovoice worksheet titled “What Matters to Me” (Appendix C) adapted from the Fournier et al. (2014) study. Participants were asked to identify, in their own language, strengths in the community and things they would like to change or improve. The “What Matters to Me” worksheet asked the participants to list things of which they were proud in their community, the community strengths, and resources available. The next question on the worksheet was “What Needs to be Changed” for their

community, first for the participant, then their family, and then the community. The worksheet concluded with an instruction to describe the story that they want their photographs to tell. Flip chart papers were taped to the walls and one research assistant wrote responses on the paper while another took notes. There were several health priorities that fit well with others so the priorities were divided into six groups and participants chose the group that addressed the priority of most concern to them. “What

Matters to Me” photovoice worksheet assisted in identifying themes they would like their photographs to represent and then the photovoice SHOW’D process was used to analyze the data. According to Hergenrather et al. (2009), community members are involved through every stage of the study; however, some modifications were needed for this study. The researcher determined the research questions based on experience with the community, and also conveniently determined the number of groups based on the number of RAs. The order of steps were modified to involve the whole community in identifying their top or most important health priorities.

Participant Training Session

During the afternoon session, participants received instruction on the use and care of the low cost digital cameras. They were also be taught how to take photographs and provided with simple photography tips. In addition, participants received training as to ethical issues of photographing people as well as how to obtain verbal consent to photograph and how to address safety concerns. The participants practiced taking pictures of each other and of around the lake. They also engaged in role playing the act of approaching people to be photographed. The participants reviewed the photo release forms and discussed logistics for the photography day.

As the day progressed one could see a transformation in the participants. With each exercise their excitement about helping their community increased. They shared at the end that they were very excited and really had an “amazing time.” Seeing the care that they provided to one another was a living example of what a caring community looks like: The younger woman getting food and drinks for the elderly, the elderly holding the babies to help the young mothers, the young men showing concern for the elderly and their issues with mobility and housing, and the older men sharing concerns for the children and young people.

Photography Session

Photographs were taken over the course of one day. All participants played active roles as they walked through the community. Men and women rotated, selecting scenes to photograph and using the camera to capture the scenes. Those with disability who were unable to hold the cameras assisting in selecting the scenes they wanted photographed.

The teams took as many pictures as they wanted but at the end of the walk, each team was to select eight photographs to present to the group; however, several groups insisted on presenting more than the eight. The RAs provided the researcher with the selected photos, which were downloaded overnight for review during the post photography sessions. Table 3 describes the demographics of each group and the health priority focus of the group as well as how many photographs each group captured and how many photographs each group selected present to all participants.

Post Photography Session 1

During the first post photography session, each of the six photography groups selected photographs that reflected their concerns to present to all participants. All participants within each group told stories about what the photographs meant and identified themes using their “What Matters to Me” worksheet as a guide. The participants within each group took turns explaining why they captured the picture in this exercise.

During this session the researcher received a call from the local NGO administrator, advising that he had located a photography shop in Jinja that could put the pictures directly on a laminated board. However, in order to have it in time for the community presentation they would need the flash drive with the pictures that evening.

To accomplish this task the schedule changed to move forward to selecting the photographs. The participants selected 17 photographs for the photo board. Decisions to include or exclude a photograph was done by group consensus and finally the photographs selected represented the seven health priorities identified.

Post Photography Session 2: Data Analysis Plan

During this data session participants discussed their photos by answering the

SHOW’D questions. Evans-Agnew and Rosenberg (2016) have explained SHOW’D as a questioning strategy based on Freirean empowerment-education techniques (Freire, 1972) proposed by Shaffer (1985). The strategy was suggested to stimulate discussion of photo and text:

S: What are we seeing here?

H: What is really happening here?

O: How does this impact our lives?

W: Why does this situation exist?

D: What can we do about it?

The participants took ownership of several issues regarding “What can we do about it?” They acknowledged the need for outside assistance for a borehole and mosquito nets as well as early treatment for health problems and road maintenance.

However, for sanitation issues they suggested developing community standards for pit latrines; asking for community education for sanitation and parenting; and developing community groups to repair and build pit latrines, falling houses, and plate racks. They also suggested collecting rain water to use for washing clothes and reserving borehole water for drinking and cooking. There were two males in their 40s an 50s who offered solutions such as the government sending in nurses and doctors to teach sanitation or the government building a public hospital and giving medication for worms. Other participants redirected them to prevention through education using community health partners to teach. The rationale for a public hospital is that the cost of treatment is generally less than a private hospital. There were some young men who stood out as leaders. One talked about developing community standards while the younger one talked about pulling together the other young men in the community to do repair projects and build pit latrines.

The RAs, who are also the community health partners, expressed enthusiasm for incorporating sanitation and parenting education sessions into their monthly visits as well

as working with the emerging leaders from this study to carry on the work of educating and monitoring the community sanitation efforts. The participants were eager and determined to “bring their community to the next level” as one of the young men phrased it.

There were also awkward moments. When discussing why the problem existed regarding the baby who was born frank breeched at home to teen parents without an attendant rather than taking the child to the hospital as the legs were on the chest, the parents tried to force the legs down and one of the legs fractured. An elderly man stood up and said the “baby was born that way because it was the devil’s work.” In another instance, a young woman wanted to administer “severe caning” to men who started drinking early in the morning and continued all day in a drunken state. But generally, there were sound practical solutions discussed. The community thanked the researcher, who pointed out that it was their study they have the answers to the problems. The researcher simply asked questions; they were providing workable solutions.

Post Photography Session 3: Preparation for the Presentation to the Community

During the third post photography session, participants clarified themes. The participants expressed the desire to present their findings to their community and to ask for their input. The participants selected six people to be their spokespersons for the community meeting. They selected six men, most of them young in their 20s and 30s.

Though the women in the group were active participants, the selection of men to present may indicate that there is male dominance within the community. Though the presenters were men, the lead RA, who was also the translator, was a woman in her mid-20s. There was discussion as to how get their point across in three minutes to hold people’s attention

and particularly when they talk with NGOs and government officials who may be very busy and short on time. The discussion centered around making their point quickly and presenting a positive description of the community rather than dwelling on any negative aspects. The men practiced their 3-minute speeches for the community presentation.

The Community Presentation

Approximately 75-100 community members, including children, gathered at the community meeting area outside a brick wall that was used to hang the photo board and a flip chart page. The local chairperson welcomed the community and spoke about the work accomplished this week. The researcher thanked him for allowing her to work with his community and presented him with two cameras and the photo board for the community’s use. The researcher explained to the community the process that had been followed: the community selection of their representatives, the identification of community strengths, the “What Matters to Me” exercise, the day of photographing, and then the two days of the SHOW’D exercise. It was explained that after the team presented the photographs the community would be asked for their input. Then each of the six team members came forward and discussed their pictures, why they had taken it, offered their meanings for the photographs, and challenged the community to find solutions for the problems. They talked about educational trainings and, if held, the community was encouraged to come, learn, and put into practice what they learned. The community was asked for input and whether they agreed with the meanings of the photographs.

When the community finished offering their input, the community was divided into 10 random groups, with each given a list of the themes (Appendix D) identified this week and asked to select their top three priorities for the first priority to work on as a

community. The community session was digitally recorded and a community health partner translated and transcribed from Soga to English for data analysis.

Following the identification of the top priorities, the RAs convened for a final session to analyze the data gleaned from the community presentation. The participants identified common themes as they arose and placed them into clusters of grouped themes on a poster board. The groups of themes were then placed into larger groups categorized as impeding or promoting factors or action items (Walker & Early, 2010). Table 4 identifies tools and questions used in this study.

Table 4

Tools and Questions

Tool Purpose Process Step Verbal consent To obtain informed Researcher assistant training, consent pre photography session with participants Photography release To obtain release to use Research assistant training, images in this study pre photography session with participants, photography session with individuals or guardians of individuals photographed “What Matters to Me” Questions to stimulate Pre photography session with photovoice worksheet: dialogue and form ideas participants and research - What are the strengths in and assist participants assistants my community that I am decide which themes proud of? they wanted their photographs to represent - What things need to change for me? - What things need to change for my family? - What things need to change for my community? - What story do I want to tell through my photos?

Tool Purpose Process Step Instructions for photography Assist participants to Research assistant and session provide in a safely approach participants’ training sessions PowerPoint presentation: individuals to photograph - Be respectful when approaching others; do not invade the private space of others. - Don’t do anything you wouldn’t usually do. - Don’t go anywhere you wouldn’t usually go. - Ask first before taking a photograph and be sure that the individual signs the photo release form. Training on camera is Provide training on use Research assistant and presented in PowerPoint of cameras participants’ training sessions presentation and hands on practice: - Turning camera on and off - How to use the flash - How to delete photographs Photography tips presented Provide useful tips to Research assistant and in PowerPoint presentation capture best images participant training sessions and hands on practice: Shooting - Hold the camera with both hands, with elbows against your body and feet spread apart, release the shutter carefully. This helps to avoid camera shake or vibration that leads to blurry pictures. - Avoid putting your finger in front of the lens. Lighting: - Place the sun at your back when taking photographs. - Use the flash outdoors even on a sunny day.

Tool Purpose Process Step Composition: - Pay attention to how you arrange the people, objects, and the environment in your photograph and don’t always think that you have to put the object in the middle of the frame. - Take a combination of posed shots and unposed shots. - Consider your distance from the subject. SHOW’D process: Stimulate dialogue, Post photography session - What are we seeing here? explore themes and with participants and RAs possible solutions - What is really happening here? - How does this impact our lives? - Why does this situation exist? - What can we do about it? Picture board For community use to Community presentation advocate for themselves with outside entities Health priority list For community members Community presentation developed by participants to select top three health priorities

Study Rigor

The rigor of this qualitative study was achieved by ensuring the trustworthiness of the findings. For this study the classical criteria established by Lincoln and Guba (1985) were described: Credibility, transferability, dependability, and confirmability, and are presented fully in Chapter 4.

Credibility refers to the truthfulness of the data and the interpretation of the data expressed in a description of prolonged engagement, persistent observations, peer debriefings, referential adequacy, and member checking. Transferability refers to the applicability of these findings to other contexts and studies. Rich descriptions of the setting and population provide important information to others who may follow or conduct studies in other small villages in Africa or other low resource countries.

Dependability refers to the stability of the data over time. Specifically, would these data be similar to data collected in similar contexts or with similar populations?

Confirmability refers to the objectivity of the findings and assurance of the participants’ voices being heard and presented.

Ethical Considerations

The study protocol was reviewed and approved by the FAU IRB (Appendix E), and a data management plan was reviewed and approved by the FAU College of Nursing

(Appendix F). A letter of support was obtained from the community chairperson and a local community leader (Appendix G). Prior to selecting subjects, the community chairperson was consulted and asked to identify any residents who should be excluded due to vulnerability such as impaired cognitive or mental status. Community health partners were identified as research assistants; some were educated in Uganda as nurses, physicians, social workers, and teachers. These research assistants were asked to translate

Soga to English and English to Soga between the participants and the researcher. The community chairperson and research assistants were provided with education regarding participants’ right to personal and healthcare privacy. Due to the language barrier and low literacy level of many residents, verbal consent was obtained from each participant prior

to beginning the study. A verbal consent form in English (Appendix H) was translated to

Soga by the RAs and read to participants in their language; the form was then signed by the individual to be photographed or by the guardian of the individual. If the individual was unable to sign their name, they made their mark, which was witnessed by the RA.

The photograph release form (Appendix I) was also used for individuals who were photographed by the participants.

An additional ethical concern related to the photovoice approach (Evans-Agnew

& Rosenberg, 2016) is privacy as individuals and private property may be identifiable and made public; another concern is also safety in that use of the images might harm participants in some way. A photograph that could place an individual in a compromising position may bring embarrassment, shame, or legal ramifications to the individual.

Another concern is that if an individual is photographed with an item that may be coveted by another, there could be a risk of theft or physical harm. Other concerns are photo selection, presentation, and publication as to whether the researcher would report how the participants selected the photos to be shared with the community and policymakers.

There is also a risk of researcher influence over the subject matter. Photo ownership is another concern unique to photovoice; standard releases may release the participant from ownership rather than allowing the participant the right to release themselves. Advocacy can be an ethical issue as to the degree participants can exercise autonomy in promoting their interest.

Strengths and Limitations of the Study

Strengths

A strength of this study was the long-standing trusting relationship already developed between the researcher and the community. The researcher has been visiting as a part of a local NGO with the community for eight years. The use of photography is a strength when there is language barriers or disabilities, as in this study. Photovoice provides a visual portrayal of participants’ experiences and shared knowledge (Nykiforuk et al., 2011.) The use of photographs can also stimulate dialogue and provide rich data.

The flexibility of the process avails itself to being adaptable to the community needs.

Photovoice provided a forum for decisions makers to see the health care issues in a community (Nykiforuk et al., 2011).

Limitations

Challenges in using the photovoice approach were the language barrier and the residents’ limited experience with technology. In addition, another challenge was the ability to take candid photographs. Cameras are a novelty in this community. Adults wanted to pose, while the children would crowd around the photographer to see themselves in the camera. Having the community partners accompany the photographer was an advantage as they assisted with crowd control. A possible limitation that has been perceived by the community is that the photovoice approach is intended for information gathering rather than action. It was important to fully explain to the community the purpose of the study and that the results would lead to action rather than the study itself.

Another possible limitation was that the study may have yielded the perceptions of a

small group from the community that may not be shared by all of the community.

However, in this study, the community vocalized agreement with the findings.

Chapter Summary

In this chapter the descriptive phenomenological method of research, CBPR, and the use of photovoice as a methodological approach of CBPR were described. The importance of being grounded in the theoretical perspectives of two nursing theories focused on cultural caring and community caring was described. The detailed processes of entering the community, the setting, the population, recruitment, data generation, analysis, dissemination, and action plan developed were described. There was also a description of tools used in this study. These detailed processes were described and presented in tables for clarification. The ethical considerations were explained, including the intricacies of preserving dignity and respect for the photographed while being used for public display and presentation. The preservation of rigor was discussed in the context of trustworthiness, auditability, and back translations of collected data. Finally the study strengths and limitations were offered for review.

CHAPTER 4. FINDINGS

Introduction

This findings in this chapter are a descriptive response to the study’s research questions:

1. What are the community’s strengths and resources identified by the

community?

2. What are the community health challenges identified by the community?

3. What does the community define as their top priority for health promotion?

4. How can photovoice be used as a vehicle to gather information by the

community to advocate for themselves?

Descriptive phenomenology provided the philosophical foundation and community-based participatory research and photovoice processes brought light to the phenomenon of interest, community empowerment for the participants in this study.

Community members participated in this study from the beginning: from data collection through to the data analysis process; presentation of the findings to the community; and engagement of a NGO to address the community health priority of access to clean potable water by the drilling of additional bore holes. Participants’ personal accounts offered the opportunity to know the world of the other living in Namagera, an agricultural community, nestled on the shores of Lake Victoria in Uganda, Africa.

Study Unfolding

This study unfolded in the community of Namagara, where all the participants lived. After selection of the participants, a day-long meeting was held to explain the study, to obtain consents, and to train on the use of the cameras. Data collection began when the participants completed a photovoice worksheet titled “What Matters to Me,” designed to identify the community strengths and needs. After the presentation of the findings, community needs were prioritized and groups were formed to address each of the six priority needs.

The following day, the research team gathered and set out to photograph their group’s priority need. The groups came back together and discussed why they took each picture and, using the SHOWD process, identified what could be done about the issue identified in the photo. That evening a slide show was created with the photographs. They next morning the team gathered and watched the slide show and selected key pictures that represented a particular priority need. This process continued until photos were selected to be placed on a display board to share with all the community members. Community members were invited to a meeting to review the priority needs as depicted in photos and the highest priority need was established by consensus: access to clean water.

Emerging Themes

Strengths and Identified Needs of the Community

The participants filled three pages of strengths and resources. Each person stood to speak, stated his/her name, and identified the strength or resource. As each person stood, one could see a transformation in their demeanor. They were very proud to be recognized and share the community strengths and resources. After a while the answers

began to repeat: the lake or the water as a community strength and resource was a common response.

Common answers to the question “What needs to change for me?” were the need for clean water, the safety of the children, education, family planning, and unemployment. These responses were many of the same answers when participants were asked “What needs to change for my family?” and “What needs to change for my community?” However, participants also expressed a desire for community leadership training. Table 5 presents the strengths, resources, and needed changes identified by the participants. All responses in this and subsequent tables are in the participants’ own words.

Table 5

What Matters to Me?

Health Community What Needs to What Needs What Needs to Priority Strengths/ Change for to Change Change for My Resources Me? for My Community Family? Access to The lake for water The lake has Access to clean clean water and fish too many rules water -boreholes Space around the for water and for lake in case of safety of children flooding who go to lake for water Need to be able to fish in lake for food Environment Need protection for environment Food Small plots of More open Enough Food for children land for gardens space for food for the Food preservation and animals farming family Plenty of mangos

Health Community What Needs to What Needs What Needs to Priority Strengths/ Change for to Change Change for My Resources Me? for My Community Family? A milling machine so no longer have use stones to crush maize Transporta- Available booda Need better More tion boodahs transportation transportation (motorcycles) Safer roads Employment Free market that Have Increased Market place allows anyone to businesses but income Business projects sell their goods no specific for community marketplace Employ- development Employment ment Seminars to teach opportunities opportun- about leadership ities and community development Treatment Buluba Hospital Need a public Public hospitals (private) hospital Treatment for Nurses who malaria and other provide small diseases drug shops Sanitation Hygiene and sanitation (broken pit latrines; children eat raw food, get worms) Education One school Need more Education More schools schools, A technical education school to learn a trade Housing Housing Solar panels Home repairs for for elderly and electricity disabled Need bedding; lacking bed sheets

Health Community What Needs to What Needs What Needs to Priority Strengths/ Change for to Change Change for My Resources Me? for My Community Family? Family Parental Peace and Sports fields or supervision of love in playgrounds for children families children Family Family planning planning Disabled and Disabled are Wheelchairs for elderly treated the same the disabled as the abled People in the community work together Social Internet access Doctrina Beach for a meeting place

The participants selected 17 of the photographs to be displayed on their picture board to exhibit the priorities. The selection was made by reviewing photographs from each category and then, by consensus, selecting photographs. The participants assigned pictures to seven health priorities categories. Table 6 presents the categories of health promotion themes and photographs selected for analysis and the picture board. Figure 1 illustrates the final picture board.

Table 6

Categories of Health Promotion Themes

Category Photos Water Food Sanitation Disease / Elderly / Unemploy- Transportation/ Lack of Disabled ment Environmental Treatment # analyzed 8 4 21 20 3 10 7 # selected for board 2 2 2 4 3 2 2

Figure 1

Picture Board

Access to Clean Water

Access to clean water was unanimously selected by the community as their top health priority. The community currently has two boreholes; however, one is not functioning properly, resulting in very long lines at the functioning borehole. Boreholes are preferable to wells as they are dug deeper into the earth’s surface, providing cleaner water; the holes are dug about 250 feet deep. Water is obtained by a manual water pump and collected in plastic jugs called jerrycans. There are hygiene concerns at the borehole because community members must wait for hours and children will often play or bring food into the borehole area. The alternative to fetching water from the borehole is to obtain water from the lake, which is home to many parasites. Table 7 depicts the reason the participants captured the photograph and their answers generated by the SHOW’s process. Figure 2 shows members of the community with jerrycans at the borehole.

Table 7

Access to Clean Water

Why Did We Take This Picture? SHOW’D Group 1: All participants: We took this picture to show the S: I see the borehole with very many jerrycans. people’s need for water. If you see H: It shows that the borehole is there but there the population of the people who is very little water that comes from the need water. As you can see the borehole. population is very many and the O: The water is not enough for the population borehole is one. So it shows the need of people. of water as we look at that picture. There are very many people and very W: The population is very high and the many jerrycans. boreholes are few. D: We can collect rainwater to use for washing and bathing.

Figure 2

Jerrycans Lined Up at the Borehole

Sanitation Related to Food Preparation

Sanitation related to food preparation emerged as the second highest priority for the community. Table 8 provides an explanation of the photograph captured and the answers derived through the SHOW’D process. Figure 3 shows a community member preparing food on the ground where animals were walking and defecating or urinating.

Table 8

Sanitation Related to Food Preparation

Why Did We Take This Picture? SHOW’D It showed they are very poor in that S: She is washing sweet potatoes and animals area. It shows that the stuff you are are walking in that area. seeing on that mat, that means they H: She is washing utensils outside where the have a scarcity of food, that is the only cow is, she can contract any disease. food they have and yet they were very O: The hen can come from where the cow hungry. was, there could be poo poo on the food which is not good. W: If this woman had materials, a plate stand this would not happen. D: Such a home sometimes it is up to the village to do something and the community can provide training that will help her get some improvement in her home. 80

Figure 3

Preparing Food on the Ground with Animals Nearby

Sanitation Related to Pit Latrines

Pit latrine are holes in the ground about 80 feet deep that are usually covered with three walls, a roof, and a door. The latrines are used for toileting. While walking through the community on the photography day, the participants found several pit latrines that were deemed unsafe. Some were in ill repair, with the roof or walls caved in. Table 9 depicts the reason the participants captured the photograph and their answers generated by the SHOW’D process. Figure 4 shows one of the uncovered pit latrines.

Table 9

Sanitation Related to Pit Latrines

Why Did We Take That Picture? SHOW’D We found that pit latrine where the S: It is an open toilet, the owner has not the kids were sitting around, the hole ability to take care of the latrine. was too big and yet it is also H: The pit latrine has no cover so it has a big uncovered. So we took it to show it hole, maybe kids will be playing by it which can is a problem, these young kids can cause an accident. easily fall into it and it is uncovered O: If diseases come out of that hole and get onto the germs can easily come out and whatever you are cooking or pots or cups, infect what they eat and they will get whatever you are eating it is going to bring sick. danger to your lives. W: They don’t have the ability to bring a cover to that hole. D: We as a community can do something and help that person.

Figure 4

Uncovered Pit Latrine with Large Hole

Elderly and Disabled Challenges

The participants also expressed concern for those with disabilities. Table 10 depicts the reason the participants captured the photograph and their answers generated

by the SHOW’D process. Figure 5 shows an image of an elderly woman diagnosed with

Hanson’s disease.

Table 10

Elderly and Disabled Challenges

Why Did We Take This Picture? SHOW’D I think you can see that other leg S: She has 1 leg and a half, she has no fingers. was cut off. And yet even this one H: That woman is in a very bad condition. had no toes. And even the fingers O: It brings to our understanding that our lives are not there. So she’s there, she today, I’m like this but tomorrow I’ll be cannot walk to get something to eat. someone else. And she stays alone in the house. W: She got that disease and she took long time She says that she has friends that without getting treatment. bring her food. Even the village will help her. She would stay D: We can teach the community that in case hungry. you contract something, you have to treat it very fast so that the disease does not affect more. If you cannot do it yourself, go to people who can help you.

Figure 5

Disabled Individual

Disease

Malaria and intestinal worms were identified as disease concerns. Children were seen eating dirt and raw food with protruding abdomens. There were houses in ill repair, 83

one house was completely open on side leaving the family vulnerable to weather and insects. Another issue related to the disease theme was some homes were found with standing water next to where the family slept. People sometimes slept on the floor with a bamboo mat but often with only clothing on the ground. The lack of, misuse of or use of mosquito nets with holes was an identified health issue. Table 11 depicts the reason the participants captured the photograph and their answers generated by the SHOW’D process. Figure 6 shows a mosquito net that is being used; however, it has many holes and is therefore ineffective.

Table 11

Disease

Why Did We Take This Picture? SHOW’D The net has holes as you see so we S: A mattress on the bed with a net with holes. are worried that this woman will H: I see a dirty net with holes. The owners are get malaria and other things. not organized. O: Mosquitos can come and bite the owner and other insects to harm him or her. W: People don’t know how to use nets. D: We need to teach our fellow friends to put up mosquito nets and try to educate, train and teach in order to do the right thing.

Figure 6

Mosquito Net with Holes Used on Bed

Lack of Medical Treatment

Lack of treatment emerged as theme. The only hospital in the community is privately owned and the community members lack the finances necessary to receive treatment. There are community health partners who visit the community monthly, but there are no birthing attendants available to assist in home births. In one instance, a young mother in her teens experienced a frank breech delivery at home with only the father, also in his teens, in attendance. The infant was born with her legs laying on her chest, the parents attempted to pull the legs down and in the process one of the legs was fractured. Table 12 depicts the reason the participants captured the photograph and their answers generated by the SHOW’D process. Figure 7 shows the infant whose leg was broken.

Table 12

Lack of Medical Treatment

Why Did We Take This Picture? SHOW’D Because of lack of treatment the S: A baby with a broken leg. parents tried to cause the legs to come H: She was born lame and the parents tried back straight it broke that leg. So the to fix her but broke her leg. neighbors collected some money and O: The baby was born lame and we have to she went to the hospital and they had to find a way to do away with that problem. put that cement on the leg so right now she has no treatment. She has no W: Cost of hospitals make mothers fear to money to take her back to the hospital attend hospitals and also take the child to to take away that cement. the hospital. D: Pregnant mothers must give birth in the nearest hospital to avoid such problems.

Figure 7

Infant with Fractured Leg

Transportation

Transportation was also identified as a social issue citing the roads as being in disrepair and dangerous. The roads are dirt with large holes. The roads are particularly dangerous during the rainy season when the roads are muddy and slippery. Table 13 depicts the reason the participants captured the photograph and their answers generated by the SHOW’D process. Figure 8 shows the road leading to the village. 86

Table 13

Transportation

Why did we take this picture? SHOW’D Those are the bad roads that we have. S: The road which is in very bad condition. That is a very big road and you can H: The road in this condition which can kill even have 2 vehicles at the same time people. but because of the big hole in that O: The road with holes might cause us to lose road cars cannot go. our lives. W: Maintenance is poor and there is no water drainage. D: We the community will raise up and request the government to come in to see the road.

Figure 8

Road Leading into Village

Environment

photograph and their answers generated by the SHOW’D process. Figure 9 shows a field of burnt papyrus.

Table 14

Environment

Why did we take this picture? SHOW’D Our environment is being S: Land that has papyrus but the papyrus is burnt. destroyed because they were H: They burnt the papyrus to destroy the burning papyrus. They were environment. burning that papyrus and the fire O: The papyrus mats, some people use them as could come and burn the bricks. mattresses but when the are burnt own we cannot And another thing they were get them. burning because they want to extend their land to be too big for W: Some one burnt that papyrus to make a road to them which was hurting the go and look for some corn or something to eat. environment. D: What we have to do first before we think of leaders helping us is to think about yourself and say “If I had been a leader, could I allow people to destroy the environment?”

Figure 9

Burnt Papyrus

Unemployment

Unemployment was identified as a social issue. Much of the community is unemployed. The participants voiced concern that there is an issue of alcoholism in the 88

community as a result of men being unemployed. There are some men who start drinking early in the morning and continue throughout the day, neglecting their families and home.

Conversely, there several stores of women who were operating small businesses. The women were described as inspirations to the community. One young male participant remarked that women are strong: they should not be put behind but should be put in front so that they bring honor to their families. One young female participant stated that she was inspired and realized that men and women both could start selling something small and build a business. Table 15 depicts the reason the participants captured the photograph and their answers generated by the SHOW’D process. Figure 10 shows one of the female business owners selling her goods.

Table 15

Unemployment

Why did we take this picture? SHOW’D That woman said she sells things S: A woman standing beside the sugar cane, she is on both sides. She explained that trying to sell them. what she sells it pays for the H: That woman is working hard because it is a family. Some things she sells and sugar cane business. some things she doesn’t sell O: That woman wants to at least survive. because people don’t buy. She sells sugar cane for the family. W: Women are strong and do not need to be put back but need to be put at the front, that brings honor to their families. D: What I learned is that whether you are a man or a woman, you can start small and get income.

Figure 10

Business Women Selling Sugar Cane

Data Analysis

The participants grouped the themes into three clusters: basic needs, safety and social/environmental. Table 16 illustrates the clusters.

Table 16

Theme Clusters

Basic Needs Safety Social/Environmental Access to clean water Sanitation- latrines bedding Unemployment and food Food preparation Hygiene Transportation Housing Health-mosquito nets, Protecting the environment worms, lack of treatment Mobility Parent education

The participants explored the clusters for impeding factors, promoting factors, and action plans. Impeding factors were determined to be items or actions for which the community would require outside assistance, while promoting factors were determined to be items or actions to which the community has access or the ability to implement without outside assistance. Table 17 illustrates these factors and action plans.

Table 17

Factors and Action Plans

Factor Issue Impeding* Promoting* Action Plan Access to Need additional Local church works Collect rain water in clean water boreholes with a NGO that buckets Need to repair provides boreholes Build rain gutters to existing borehole Rainy season collect water Develop community rules for maintaining the boreholes Ask NGOs for assistance to repair and dig boreholes Safety Need for hospital Community health Community health Need for partners and partners and participants building community leaders (community leaders) will materials available to provide provide lessons to the sanitation, hygiene, community: health and safety Hygiene lessons Sanitation Natural materials that Mosquito nets/malaria can be used for building repairs Prevention Community members Food preparation-worm to make repairs prevention This team will also do regular community walks to identify needs - will offer education and will collect supplies to repair pit latrines, houses and build plate stands Community leaders will develop rules for digging and covering pit latrines Work with community health partners to teach sanitation, hygiene and disease lessons to the community

Factor Issue Impeding* Promoting* Action Plan Social/ environmental Unemployment Lack of Use natural resources Request classes on how industry, no skill to start new business jobs Start business with available resources - cooking, sugar cane Transportation Roads Help to maintain Take photo board to the maintained by roads government and ask for government roads to be improved contracts Remove debris and fill in holes when possible Environment Others burning Living in the Set up rules to restrict fields, chopping community burning, chopping down down trees, Observing day-to- trees and removal of soil taking soil for day activities from lake lake leaving Educate the community deep holes on the dangers of these activities and the consequences of abusing the environment Note: Impeding: community needs outside assistance; promoting: community can address without outside assistance.

Variant Themes

Gender violence, spiritual beliefs, and parental and community responsibility emerged as variant themes in this study. These themes emerged from single individual statements but deserve some mention in this study. The community did not select these as health priorities; however, there is a potential impact on health. The participants explained that by the time the young girls who often fetch water for the family return from school, it is late in the afternoon. They may encounter a very long wait at the borehole or the borehole has dried up for the day. The girls often walk long distances in

the evening to fetch water from the lake and there have been instances of girls fetching water who have been raped. During the photography phase the participants witnessed situations that caused concern for the girls.

Spiritual beliefs that could also impact health emerged as a variant theme during the discussion of the baby whose leg was fractured by his parents following a frank breech birth. The baby emerged with a leg deformity; the parents tried to straighten the leg and the leg was fractured. One older male participant stated that the problem exists because it is “the work of the devil.” This theme could be explored in future studies looking at the impact of spiritual and cultural beliefs on the experience of health and well-being within this community.

When discussing the concern of children eating raw food or cooking for themselves over open fires in a hut, the participants discussed at length the theme of parental responsibility. They voiced that parenting classes should be taught about hygiene and sanitation, but also that parents should be taught to set up a timetable for meals so children could eat regularly. They also discussed the parents should take the responsibility of ascertaining that children have food available when the parents are away at work or digging in the garden.

The theme of community responsibility emerged several times. The theme first emerged during the “What Matters to Me” as a strength: that community works together and they treat the disable the same as the abled. The participants voiced that as a community they should assist their neighbors with home repairs, cleaning, and organizing homes. They also voiced that the community currently assist the elderly and the disabled by providing food for them but recognized that more should be done regarding their

housing situations. Some of the participant comments related to the variant themes are shown in Table 18.

Table 18

Variant Themes

Gender Violence Spiritual Parental Community Beliefs Responsibility Responsibility At that same lake It is the What I see that we Let’s all take the where these girls devil’s work, can do about this are responsibility of knowing were washing Satan. parents that neglect how these people are, our their clothes, the responsibility of lepers are which there were some parenting those kids. conditions are here. fishermen who This picture shows Because you can at least were naked, that the mother and go and help that person to totally naked father left these kids get the rubbish empty it bathing. We have behind and went out. Maybe wash things had young girls somewhere else because she’s unable to attacked at the that’s why you’re do that. Even these lake by men. So seeing those kids leaders in the community if they had a there they want food must take the borehole near that is cooked but its responsibility of going their home they not there so if they around to check on such would not risk eat that raw food that homes. I think that is their lives to go is around that is why what we can do to deal to the lake where you find that the kids away with that problem. these fishermen will wind up eating are bathing and raw food. worse.

Synthesis Meaning

As this research study unfolded, from the beginning throughout the process of data collection and analysis, hope emerged in individuals and in the community as a whole. This was seen in their willingness to take ownership of the community challenges and a determination to solve their own problems either by themselves as a community or by partnering with other entities when they lacked the resources to solve the problem themselves.

The evolution began with the community chairperson giving the community the choice of whether or not to participate, illustrating the concept of cultural safety. The community chose to participate and selected their own representatives. The members of the community saw themselves as a community. They selected participants who would represent their needs and hopes and dreams for health and well-being. During the pre photography session the participants were asked to identify strengths and resources in the community. As each person stood there was a transformation in their demeanor. They were very proud to be recognized and to share the community strengths and resources.

The community recognized that they had capacity to build on their strength of working together and that they did possess resources such as the lake, plots of land, and a milling machine.

During the post photography sessions and working through the SHOW’D process with each photograph, community members would speak more often, would speak more confidently, and would exude enthusiasm to put forth measures and activities that could improve the life of their community. They recognized and embraced the principle of equal partnerships. They also expressed a hunger to learn more and to build capacity by teaching other community members. During data analysis the participants identified the public health relevance of basic needs, safety, and security needs. They identified the ecological issues that impacted the health of the community. The participants understood that for a community project to be successful they would need buy-in from the community at large. To achieve this the participants disseminated their findings to the community, asked for and listened to their input, and then asked the community to

determine their top priorities. During the action planning sessions, participants identified systems they would need to develop as well as potential external partners.

The foundation of empowerment is community involvement from start to finish, from planning to implementation to evaluation. This study began with the community selecting their own representatives and continued with the representatives analyzing the data they had collected. The first step towards community empowerment is individual empowerment (Kieffer, 1984). As individuals in this study, the participants learned new skills for photography, leadership, and public speaking. As a community they celebrated their strengths and resources, identified areas for improvement, and developed short- as well as long-term action plans.

When the community has a voice in influencing what happens in their community and solutions are sought from within the community, there is community empowerment

(Rappaport, 1987). In this study, the participants stated that their “eyes had been opened” as to how they could help their community; this was their community and they could and would take care of their community. Most left the final session with great enthusiasm to start working right away as they found they now had voice and a mechanism to make their voice heard. They left with expressed feelings of empowerment as individuals and as a community. Participant statements suggesting a sense of community empowerment are presented in Table 19.

Table 19

Participant Statements Indicating Community Empowerment

Health Priority Community Empowerment Statement Access to clean water If many of us can know our problem in the community it will be so easy for us to take on such problems. If I can get 2 jerrycans of water or 3 cans and then maybe it rains let’s try this as a community to collect that water so that we can use that water and use for washing then let’s use that from the borehole, we can use that for drinking, we use the rain water for washing and the borehole water we use it for drinking and cooking. Sanitation related to food preparation Such a home, sometimes it is up to the village to do something and even the community. We have to take the responsibility of training or teaching people in homes that even though the kids have to learn how to cook we have to first teach the people how told to prepare their children to do everything, and what to do and the result of their cooking. That helps us to solve the problem if we train the community what to do. Disease Let’s all take the responsibility of knowing the conditions these people are living in. The community leaders must take the responsibility of going around to check on such homes. What we can do about it we as a community we have a lot of work to do. We need to come together with the VHCs [village health coordinators] so that we can move around the community trying to teach people, trying to give them advice, try to train them is what is required. Transportation We the community we will raise up and call the government to ask for help.

Built on the concepts of caring, cultural humility, and cultural safety, this community-based participatory research provided a platform that cast the nurse and the community as partners walking along side one another, with each examining themselves for bias, listening to each other’s voices and hearts, joining in partnership and walking hand in hand as they continue the lifelong journey of caring for their community, and striving towards better health and well-being for all. Rappaport (1987) proposed that community empowerment is when the community members control their own life as well as the life of the community. This study demonstrated that while community members can control intrinsic factors that affect their lives, community members can also influence extrinsic factors that affect their lives. This research study provided a platform for individuals as a community to come together, to identify their strengths and challenges, and to advocate for themselves as a community. The community found that even in those areas over which they may not have direct control, as in the case of needing boreholes, they found that they could use their voice to influence those areas by advocating for outside assistance.

Study Rigor

The rigor of a qualitative study is achieved by ensuring the trustworthiness of the findings. For this study the classical criteria established by Lincolnand Guba (1985) were described: credibility, transferability, dependability, and confirmability.

Credibility refers to the truthfulness of the data and the interpretation of the data expressed in a description of prolonged engagement, persistent observations, peer debriefings, referential adequacy, and member checking. The researcher established herself has a prolonged engagement of being in this community over the last eight years,

offering her expertise in health issues. During this study, the researcher was present during the entire time of data collection and analysis, observing and keeping a journal of thoughts. The numerous inquiry group sessions served as a data collection opportunity and debriefing opportunity. The researcher met the standard of referential adequacy by conducting an extensive literature review of the research methods and having knowledge of the community from an ongoing presence over the years. The researcher was often present, sitting under a mango tree in the center of the community, available for member checking with the research team and community members.

Transferability refers to the applicability of findings to other contexts and studies.

Rich descriptions of the setting and population provided important information to others who may follow or conduct studies in other small villages in Africa or in other low resource countries. Credit the ease with which the researcher was accepted within this vulnerable population to her intention to live by the tenets of cultural humility. Cultural humility is described well and offers a model of being a partner with others.

Dependability refers to the stability of the data over time. Specifically, would these data be similar to data collected in similar contexts or with similar populations? An inquiry audit can be conducted by reviewing the numerous tables created to provide clarity to the research processes, data collection methods, and findings. Many of findings were presented with a representative photo of the issue and a full description in the participants’ words of the issue using the results of the SHOW’D process. A back translation process was described. The data were in the Soga language translated to

English by one language facilitator and then translated back by another from English to

Soga to confirm accuracy (Fournier et al., 2014).

Confirmability refers to the objectivity of the findings and assurance of the participants’ voices being heard and presented. The data provided in this study were often in the participants’ words and may be viewed in the tables depicting the SHOWD process. Further, the findings were confirmed by the community members in a meeting held after the study was conducted, and the researcher returned to Uganda to have the findings confirmed or to receive input on discrepancies. Community members confirmed the findings. Additionally, a committee of research experts confirm the findings.

Chapter Summary

The findings in Chapter 4 reflect and illuminate the study purpose: to give voice to an underserved and vulnerable community in order to advocate for their health priorities. The research processes of CBPR and photovoice as well as the theoretical perspectives of caring in nursing of Leininger (Leininger & McFarland, 2006) and Parker et al. (2020) inspired and supported this qualitative study. Additionally, the researcher, grounded in the concept of cultural humility, entered the community as a trusted friend, inviting community members to participate with the researcher to uncover the community strengths and possible health issues. They felt safe and joined the study as equal partners.

The research processes unfolded with the participants’ engagement and the commitment to help their community. Within the context of inquiry group sessions, training sessions, photography walks through the community, and the SHOWD process, participants found their voices to speak up and to speak out. Themes, both common and some variant, emerged through the progression of the study and action plans were developed and prioritized. The community’s identification of health priorities and action plans for projects the community can complete without outside assistance and projects for which

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they would require assistance were presented. The purpose of this study was achieved through CBPR using the photovoice process and is indicated by the photographs and tables presented in this chapter. The findings demonstrate that the community used their voice to advocate for themselves.

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CHAPTER 5. DISCUSSION AND RECOMMENDATIONS

This chapter provides a summary of the study: the theoretical underpinnings; the findings; the contribution of findings to caring science; the recommendations for nursing practice grounded in cultural humility; and caring for individuals, families, and communities in local as well as global communities. Suggestions for nursing education are offered to include curricula enhancements to the study of culture, epidemiology, anthropology and global health. New and seasoned researchers are encouraged to conduct studies utilizing community based participatory research (CBPR) using photovoice methods to discover a deeper understanding of community empowerment that fosters members to advocate for changes that may influence health and well-being. The findings provide evidence that policy development is needed in the United States and in the global community that assure the voices of all citizens are heard to create communities of inclusion, respect, and nurturance of what matters.

Theoretical Approach

This study was guided by a combined theoretical framework and approach to gain an understanding of community members living of a rural underserved country, Uganda, located in sub-Saharan East Africa, some who have been ostracized following diagnosis of an often stigmatized health condition, Hansen’s disease (leprosy). This philosophical approach demonstrated the influence of the overarching cultural care diversity and universality grand theory (Leininger & McFarland, 2006) as well as the community nursing practice model (Parker et al., 2020). This study required an appreciation of the

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community’s lifeways and cultural practices in order to provide a sense of safety and respect for participants (Leininger & McFarland, 2006). The study was dependent upon full cooperation by the participants in the inquiry process of the community nursing practice model (CNPM) and the results for the study supported the premise of community empowerment by realizing that the answers to the community’s problems lie within the community (Persily & Hildebrandt, 2008).

The grand nursing theory (Leininger & McFarland, 2006) overarching this study, cultural care diversity and universality, is a caring theory. Leininger believed that care was the essence of nursing. She also posited that it is caring that distinguishes humans providing dignity and inspiration for better health and for helping other. There is a relationship between care and culture. In order to provide care that is beneficial, the nurse needs to understand human behavior in health and illness from a worldwide focus, recognizing the diversity among different cultures. According to Leininger, culture is a universal feature of humankind and care is an essential component in culture (Leininger

& McFarland, 2006). Caring is an action while care is a phenomenon to be understood and a phenomenon that could provide guidance for caring actions. Leininger put forth three action and decision modes of culture care theory: cultural care preservation and maintenance, culture care accommodation or negotiation, and culture care re-patterning.

Culture care preservation calls for the nurse to make decisions that preserve or maintain the care recipient’s care beliefs and values. Culture care accommodation or negotiation calls for the nurse to develop creative actions or decisions that will assist those from another culture to adapt or negotiate for culturally congruent, yet safe and effective, care.

Culture care re-patterning or restructuring challenges the nurse and care recipient to

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arrive at a mutual decision that will assist the care recipient to modify their lifeways for better health outcomes (Leininger & McFarland, 2006). These three action and decision modes empower the care recipient or, as in the case of this study, the individuals as well as the community. This study was guided by the three modes: respecting the other culture’s beliefs and values, accommodating or negotiating when necessary to remain culturally congruent, and working with the community to re-pattern if necessary for better health outcomes while respecting their cultural lifeways. This study was guided by this theory in that the researcher cared for the community and respected their culture’s beliefs and values. This researcher accommodated the community by including more participants than set forth in the protocol and deferring to the community for selection of photographs and their audience.

The CNPM provided a solid framework for this community-based participatory research study. The theory represents the mission and nursing concept of the Christine E.

Lynn College of Nursing at Florida Atlantic University: Nursing is nurturing the wholeness of persons and environments in caring (Florida Atlantic University, College of

Nursing, n.d.). Community practice guides the theory through the use of participatory- action approaches and utilizes inquiry groups for shared reflections and discovery. The theory addresses the principle values for health for all set forth by the World Health

Organization: access, essentiality, community participation, empowerment, and intersectoral collaboration (Parker et al., 2020). This study used inquiry groups to identify community strengths, resources, and challenges. The community was active in recruiting participants, in selecting themes for photography, in determining which images would be photographs, in deciding which photographs would be shared then analyzed with all

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participants, in deciding that they would present their findings to their community, in scheduling the time and location of this meeting, and in developing action plans.

Parker et al. (2020) have maintained that persons are empowered by understanding options and making choices for themselves, their families, and their community. Inquiry groups recognize that the individual is an equal partner and is the expert on the subject matter being studied; the research facilitator is the expert on the process.

The CNPM arrived at a definition of community based on C. Smith and Mauer’s

(1995) definition of community as persons with shared values. The CNPM theory’s incorporation of Ubuntu philosophy of caring for one another as well as community calls for understanding of personal perceptive and the community perspectives as a collective body. The theory was enhanced by adding values of the African Ubuntu philosophy

(Barry et al., 2015) when it was observed that most CNPMs were designed for implementation in western culture communities. Lajul (2014) characterized Ubuntu as a humanistic philosophy that centers on people’s allegiance to and relationships with others. The philosophy has been described by several African philosophers: Tutu described Ubuntu as being open and available to others. Mandela explained the philosophy as not prohibiting the individual from self-enrichment but rather asking the question if the self-enrichment is done to enrich the community. Erasmus Prinsloo interpreted Ubuntu as African brotherhood calling Africans to share with and treat others as human beings. Chikanda defined Ubuntu as a willingness to give to the needy, offer sympathy and care, be sensitive to the needs of others, respect and consider others, and be patient and kind. Makkudu explained Uubuntu as being warm, empathetic, able to

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communicate, interact, participate, share, reciprocate, cooperate, be in harmony with the other, and share world views with the other (Lajul, 2014). Barry et al. (2015) found that the use of Ubuntu as a philosophical underpinning for CNPM accommodated for the cultural aspects, values, and behaviors as an essential way of caring for another observed in their Ugandan study participants. The philosophy’s emphasis on belonging and concern for the community rather than the individual supports the CNPM and CBPR and promotes community empowerment. This CBPR study guided by the culture care diversity model, framed by the CNPM model, and underpinned by Ubuntu philosophy utilized inquiry groups for sharing and discovery while respecting individuals the community and cultural ways. Table 20 illustrates the relationship between culture care diversity and universality grand theory and the community nursing practice model.

Table 20

Theoretical Relationships

Theory Culture Care Diversity and Community Nursing Practice Universality Model Purpose Care is the essence of nursing; Influenced by Ubuntu there is a relationship between philosophy, nursing is nurturing care and culture. the wholeness of persons and environment in caring. Focus Diversity of lifeways, traditions, Participatory in inquiry groups values, beliefs. to provide understanding of lifeways, traditions, and beliefs. Congruence Exploration of diverse lifeways. Strategies to learn diverse cultural lifeways.

Research Methodology Approach

Traditional descriptive phenomenology methodology influenced by Husserl

(1931/2013) was used to provide a forum for participants to explore their own community and recognize their strengths as well as their needs by using an approach that 106

would offer not only a verbal description of their world but also a visual depiction of their world. The community based participatory research approach using photovoice in this study provided the participants a platform to make their voices heard within the inquiry groups, within the community as a whole, and by other entities with whom they would meet to advocate for their community.

The SHOW’D process of data analysis provided the participants with the opportunity to not only identify the community needs but to develop an understanding as to why the problems exist and how the problems are impacting their lives, and to explore possible actions that can be taken to resolve the problems. A result of each group taking issue-directed photographs was that though a few participants may have identified the problem, the entire group of participants had an active role in identifying the reasons for the problem and possible solutions. Likewise, the entire community was also given the opportunity to participate in identifying their top health priorities and action plans.

Findings

The findings of this study add support for community empowerment through community-based research, the community nurse practice model (Parker et al., 2020) and the relevancy of using photography as a vehicle for giving voice to vulnerable and underserved communities. Though there is some photovoice literature published in nursing literature, most of the literature is found within the domains of health literature and public health with studies conducted by health educators, physicians, and sociologist.

This study illustrating the benefits of community-based health promotion projects adds to the body of knowledge in the science of nursing. Community-based nurses seeking to develop and implement community health promotion programs are well positioned to

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facilitate successful programs developed by communities who are empowered by their own voices. The findings of this study inform nurses and can assist them facilitating the emergence and development of community-led action plans for health promotion.

The following emergent themes were the top health priorities identified by the community. The themes served to guide the community in recognizing a hierarchy of needs predicated on basic human needs taking top priority, followed by safety, and culminating with social and environmental. Empowered by the process of identifying health priorities, presenting to the community, and gaining the community’s approval of their work, the participants developed action plans that could be accomplished by themselves and action plans for which they would require outside assistance. Action plans were broken down to address three categories of health issues: access to clean water, safety, and social/environmental concerns.

Variant themes also emerged from the data: gender violence, spiritual beliefs, and parental and community responsibility. These themes emerged from single individual statements and were not selected among the community health priorities. However, there is a potential impact on community health and well-being and these statements can serve as a call for a secondary analysis of the data or focus of future research studies.

Access to Clean Water

Access to clean water was unanimously ranked as the top health priority among the community. The action plans developed were to post rules at the borehole site to promote hygiene and keep the borehole clean. Other plans were to use barrels or rain gutters to collect rainwater for bathing and washing clothes, saving the borehole water for drinking, cooking, and washing dishes. The community will also take their photo board to

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community agencies to advocate for assistance in repairing the nonfunctioning boreholes and to dig new boreholes to meet the community needs.

Sanitation Related to Food Preparation

This issue emerged as the second highest priority. The action plan is to provide education on hygiene and safety matters to the community and build plate stands for families in need of a food preparation area.

Sanitation Related to Pit Latrines

Sanitation related to pit latrines emerged as the third highest priority. The participants developed action plans to provide sanitation and hygiene lessons to the community in group settings and while on their community walks. They will collect supplies to repair latrines, and they will work with homeowners to repair their latrines.

The community leaders will also develop rules for building pit latrines regarding the size of the holes and maintenance of covers for the pit latrines.

Other Safety Issues

Other safety issues identified were houses in ill repair: One house was completely open on one side leaving the family vulnerable to weather and insects. Some homes were found with standing water next to where the family slept, on the floor sometimes with a bamboo mat but often with only clothing on the ground. The participants planned to educate the community about keeping their homes organized and about not keeping standing water in the home. The lack of, misuse of, or use of mosquito nets with holes were also an identified health issue. The participants plan to provide education to the community on malaria prevention and proper use of nets, and they will use their photo board to request NGOs to assists in a mosquito net distribution project. The participants

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will also provide education for parents in parenting skills such as providing regular scheduled meals for children, worm prevention, and disease and injury prevention. As for lack of treatment, the participants acknowledged that practicing safety, sanitation processes, and hygiene may decrease the need for treatment. The participants will encourage mothers to seek out prenatal care and midwives for home births.

Social/Environmental

The participants will use their photo board to request government or NGO entities to provide community classes related to starting a new business using naturally available resources such as sugar cane, fruits, vegetables, and bamboo; cooking; building; or crafts.

Preserving nature was identified as an environmental concern. There were photographs displaying the damage done by burning the forest and cutting down trees for building as well as removing soil from the lake, creating large dangerous holes or sudden deep areas near the shore. The participants plan to educate the community about the risk to human life as well as the environment by engaging in these practices and to develop rules for burning, cutting trees, and soil removal from the lake.

Findings Post Script

The researcher returned to Uganda five months after this study. During this visit the researcher met with the participants as a follow-up exercise. One participant had moved away but the others were all present. Health priorities that emerged during the study were reviewed. The action plan for the top priority, access to clean water, resulted in a visit by an NGO and plans to return to repair their malfunctioning borehole and to later dig a new borehole. The team and the community health partners were meeting the first Tuesday of each month. They also move through the community to provide

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education and repairs. They led the researcher on a walk through the community to show two plate stands they had built for two households and two pit latrines they had repaired to address the sanitation concerns. After repairing the first pit latrine, the owner followed them to the second and provided the grass for the repairs and assisted with the repairs. He now joins them on their monthly walks. They plan to ask homeowners to provide something towards their projects, nails for example, so they can have ownership of the project. They have developed rules for the borehole and are having them laminated and posted at the borehole. They have also adopted rules for hole size and covering pit latrines. They have been educating the community on hygiene, sanitation, and mosquito net use. Community health partners from a local NGO are providing nets. The community gathered their resources for the baby with the fractured leg and he was taken to the hospital. The researcher visited the baby and he is beginning to bear weight and starting to walk. The community continues to be excited and energized by seeing the results of working together as a community to promote health and safety. The participants not only fully embrace the idea of community empowerment but have given life to the concept. The participants are very proud of the changes they are making in the lives of their neighbors. The community is experiencing and exemplifying community empowerment.

Nursing Practice

The community nurse is uniquely positioned to partner with communities in developing health promotion education programs. The community nurse may engage in vulnerable and underserved communities as well as in communities of faith or in marginalized communities such as communities of immigrants. While nurses possess the

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knowledge of factors impeding health promotion, the community possesses knowledge of their unique health promotion impediments or needs. The community also possesses knowledge of the historical factors influencing the community; of logistical, cultural, and social challenges, as well as of resources. The community nurse may find partnering with community members to identify knowledge deficits and educational opportunities will improve the possibility of developing successful health promotion programs. The nurse in partnership with the community may develop educational programs that are taught by community members. The nurse should enter partnership with the community with a sense of cultural humility and provide a sense of cultural safety for the community teachers and students. This may be done by first reviewing the subject matter and delivery methods with community members to account for historical factors and cultural or social issues that may either impede or promote learning. In the community in which this study was conducted, community classes are being developed to address sanitation, hygiene, nutrition, parenting, malaria and other disease prevention, as well as leadership, public speaking, and entrepreneurship classes. Empowered with the tools of inquiry and photography as a vehicle for demonstrating needs and solutions, community members could share with other communities the lessons learned and assist their neighbors in identifying their needs, finding solutions, and making their voices heard.

Education

The process of inquiry, along with concepts of cultural humility and cultural safety, can be presented to mission groups or humanitarian groups prior to their entering a community. According to Corbett and Fikkert (2014), there are countless stories of western groups traveling to developing countries or entering underserved communities

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within the United States with their own ideas of the communities’ problems and their own solutions based on western culture and societal norms. There are stories of large machinery being donated to communities in developing countries that are found rusting in the fields, houses built in western styles, and amenities that are never lived in or sometimes even torn down as soon as the teams depart. Groups entering communities intending to provide help and relief can often inflict more damage by ignoring the lifeways and beliefs of the very community in which they intend to serve. Classes on cultural humility and cultural safety as well as techniques for facilitating inquiry groups could better equip groups to enter communities with humility and openness, to go with a desire to learn rather than to teach, and ultimately to walk side-by-side with the community rather than taking the lead and expecting the community to follow.

Community based participatory research using photovoice could be incorporated into graduate nursing academic curriculum. Whether in the hospital at the bedside, in communities in rural or urban America, or in communities around the world, nurses could use this approach of inquiry to learn about the communities in which they are practicing and provide a forum to give voice to these communities as they advocate for their own health promotion activities, whether it be by calling their community to solve their own problems or standing together as a community in asking for assistance when needed. The findings of this study as well as other studies using this approach could be presented at local as well as international conferences not only for nurses but for other health and caring professions.

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Policy Development

Nurses have opportunities to not only influence but to assist in developing policy in a variety of settings. In the case of this study, the nurse may partner with the community to develop sanitation and health promoting policies to be implemented within the community, such as rules and behaviors at the borehole site or regulatory codes for pit latrines and food preparation. The community can also meet with government official to bring awareness of the health, sanitation, and environmental conditions of their community. The study findings could be used to guide policymakers in developing programs that would assist the community, such as accessing a new borehole, repairing the roads, providing mosquito nets to the community, or educating community health partners within the community to fill the access-to-care gap within the community. The community can develop their own polices, such as rules for keeping the boreholes clean, regulating the pit latrine hole sizes, and requiring holes to be covered.

The method and approach used in this study could be used by policymakers at all levels of governments locally and globally as well as by international aid or health organizations to work with communities to find and implement meaningful and sustainable solutions. It is important in any health promotion program that the problems addressed are seen as a need by the community and the solutions are discovered by the community. When the researcher first started interacting with the community in this study, she went into the community thinking that their top priority would be malaria prevention. But by listening to the community, she learned there were many other issues that the community viewed as their top priorities, such as access to clean water and sanitation as well as safety related to pit latrines. Developing policies and programs for

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malaria prevention would likely not have been successful as the community would have had to implement and promote policies not seen as most important to them. The community is the expert in their community: They know their needs, their assets, and their resources. Any policy development at the local or global level must include community involvement if the policies are to be beneficial and sustainable.

Recommendations for Nursing Research

The participants in this study were members of a community living in a village identified as a leper colony. However, the community is comprised of both healthy and disabled groups. Given the varied ability levels of this group, general health issues were identified and the group had the ability to develop actions plans they would be able to implement. Further research could consider the challenges and empowerment of individuals living in institutional settings with members of their same ability level such as the leper dormitory at Buluba Hospital near Namagera in Uganda.

This study suggested a difference in generational attitudes towards empowerment.

While many of the younger participants were eager to step forward and lead their community in owning and solving their problems, many of the older generation responded that the community could not solve their programs; they needed the government or someone else to solve the problems for them. Further studies between groups could be beneficial in determining how to best approach different generations.

Though women did participate in discussions, the men were much more verbal. When it was time to select representatives to present the findings to the community, the group selected all men. Further studies could be specific to female participants to determine if

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the priorities and action plans would be different when seen only through the eyes of women, and also to give voice to women in male-dominated societies.

Further study to determine the effectiveness and the sustainability of the actions plans should be conducted at varying time intervals. Other studies could be conducted in other communities to determine if this method and approach has validity across settings.

The variant themes that emerged warrant future research. Future research may target young women between the ages of 18-24 to consider the theme of gender violence and how it impacts the lives of young women and the community as a whole. Spiritual beliefs could also be studied between groups of individuals ages 18-40 and 41-80 to consider differences or similarities between groups and the impact the beliefs may have on the life of the community. Parental responsibility is another area that warrants further research. A study of parents of children from newborn to 18 years of age may assist the community in designing parent education classes that best meet the needs of the families. Community responsibility may be studied among different communities to determine if there is a common theme between communities.

Advancing Caring Science

As part of a global community, nurses are called to care for all citizens of the world. Whether one is practicing at home in diverse communities or abroad, the concepts of cultural humility and cultural safety are paramount to developing caring partnerships with individuals, families, and communities. By examining oneself for bias, one can recognize preconceived ideas or images of stereotypes. Once recognized, acknowledged, and examined, one can put aside those biases and enter into a caring relationship that will promote healing and wholeness not only for the individual or community, but also for the

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nurse or other health professional. Recognizing the fears, concerns, or hesitation that stem from historical, political, or social history and then giving the individual or community voice to say whether they want to participate will promote cultural safety.

Listening empathetically to the individual or community not only with one’s ears but with one’s heart and listening to the emotions as well as the words will provide the nurse or other health professional the opportunity to hear the challenges, the pain, the success, and the joys of the individual or community. Developing an understanding of what it means to be a person from a different community will open the door for honest partnering and connection in the pursuit of healing and health promotion.

The caring framework of the culture care diversity and universality theory

(Leininger & McFarland, 2006) and the community empowerment focus of the CNPM

(Parker et al., 2020) provides a foundation for working with people from diverse cultures that will assist the community in self-advocacy and empowerment. The incorporation of

Ubuntu philosophy keeps cultural aspects, behaviors, and respect for person as well as community as essential elements of the research. With caring as a foundation, this study incorporated the components of empowerment, cultural humility, and cultural safety to lay the framework for listening and hearing the voices of a marginalized community and to care for the community as they faced the challenges of engaging in advocacy and empowerment. This study linked CBPR using photovoice to caring science. Though there are studies that use CBPR and photovoice, this study was unique in that it was guided by caring theories. This study advances caring science by providing a forum for underserved and vulnerable populations to have their voices heard so that they may advocate for themselves. The steps used in this study facilitated community empowerment by

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engaging the community from the point of recruitment to dissemination and action plan development. The sense of community empowerment was evident in the participants’ statements acknowledging ownership of the issues and the solutions. The principles of caring, coupled with cultural humility and cultural safety, provided an opportunity for every voice to be heard and acknowledged.

Nurses can enter communities as a trusted resource but also are at risk of being perceived as an authority figure and an expert. Cultural humility and cultural safety are two concepts that are paramount to successfully entering a community and facilitating the community to recognize their own empowerment and giving themselves voice to advocate for themselves. Community-based participatory research using photovoice provides a platform that casts the nurse as student, the community as expert. This platform casts both the nurse and the community as partners walking along side one another, each examining themselves for bias, listening to each other’s voices and hearts, joining in partnership, and walking hand-in-hand as they continue the lifelong journey of caring for their community and striving towards better health outcomes for all.

Summary

This study provided answers to each of the following research questions:

What are the community’s strengths and resources identified by the community?

The community listed several strengths and resources including the lake, plots of land for farming, treating the disabled the same as the able, and working together.

What are the community health challenges identified by the community? The health challenges identified by the community were access to clean water, safety issues

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related to sanitation, disease, lack of medical treatment, transportation, environmental protection, and unemployment.

What does the community define as their top priority for health promotion? The community identified access to clean water as their top health priority.

How can photovoice be used as a vehicle to gather information by the community to advocate for themselves? As a result of the study, the community identified and developed action plans including using the picture board to advocate for outside assistance when needed.

The following study aims were met:

To assist a community in Uganda to identify health priorities. The community identified health priorities.

To explore the use of photovoice in a qualitative community based participatory research study as a means of self advocacy. The community used photovoice to advocate for themselves within their community and outside entities as in the case of the borehole where an NGO agreed to repair and dig a new one for the community.

To help the Ugandan community create a vehicle to disseminate their stories as a means to educate others with similar health priorities and bring awareness to policy makers. The community used their picture board that was created from the photovoice process to disseminate the findings to their community at large and also to advocate for borehole repairs and a new borehole with a local NGO.

To give voice to an underserved and vulnerable community to advocate for themselves was experienced by community members (the purpose of this study). From the inquiry group sessions to the community presentations and postscript to the meeting with

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a local NGO, the community members used their voice to advocate for themselves. The community found empowerment, even when there were issues that they could not solve on their own, they found they could use their voices to influence other entities to partner with them to resolve their concerns.

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APPENDICES

121

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Appendix C. What Matters to Me Document

What matters to me?

What are the strengths in my community that I am proud of?

What things need to change for me?

What things need to change for my family?

What things need to change for my community?

What story do I want to tell through my photos?

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Appendix D. Health Priorities

Water: accessible and clean for drinking and cooking

Water: clean and accessible water for clothes and bathing

Food: preparation and storage

Sanitation: food preparation

Sanitation: pit latrines

Hygiene: bedding

Mosquito nets

Worms

Parent education

Lack of treatment, including attended births

Elderly: food, housing, mobility

Disabled: food, housing, mobility

Transportation: road repair and maintenance

Environment: preserving nature

Unemployment

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Appendix E. Study Protocol

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)!, ! " J,&,) "# %) -- %+,- $ +( '. $ %. &*, ,-%) --%+,- $ ## ""-)*%( $ .- ' , - ,( + " $, $ ., +( '. $ % ( *+ ,+-(, $ ., ) -%(, , , "# +( '. $ %! , , .%-, , , & (* -- J -!$, () (&- J " &* $ ,., !, %$ + % $ *,(, $-( $ , %$,( ,( -+* $ " +( '. $ %( (*"#" ,!, &,$!, -(., ,-- " %(.-*) ' ,- $-. $ ' , ,.* $- $-( & $ *,(, "#"# +( '. $ %&,-&!, '-&,-, - &!.+ " %(' ,-,, &. " +( '. $ %.,-,, &.*$&*,(, .,%,*$ . & ,, " &*& , ,- %) * , %, ,( , % &-&!, , ,- %) ',- (& ,)&* *,(, *,(, ,( ,,! " , * .,-,, , $. *,(, ! " +( '. $ % !-.$*+%. , -"" # - %. % ,! , ' ,) ,$+-- + $ -( , " -( (+-%. ( , + ) , , , ,- %+ ) - +( '. $ %(-(!,* ,!- ,( -( ,- $ *,, "" * (* , ,( , , "" &%(, +( '. $ %& '*.(,'-J% ""%(' ,- ,-) J " $,+ ( . $* ' &-+L * %$ + ,( %, %, ) , , $ , $ !, ,*+* ' ,!,(( ,( %$,( $-( , " #$ # +( '. **,-*&% . % )',&(&%( % & *,- + " ( # ( &..,( #, ", , ,, # , -( ,- $ *,, " -!,- %+,- ,( ( ' - ( &,!- &,--) ,. ( ' ++ ,( ., +( '. $ %$ $+%&! $ $+ ,( ""%(' -( ,- $ *,, " -( ,-,, % " +( '. $ %$ .,-,,%&!- , -( .,-,, % "

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Appendix F. Data Management Plan

136

137

138

139

Appendix H. Adult Verbal Consent Form

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