Identifying Health Priorities for a Vulnerable Underserved
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IDENTIFYING HEALTH PRIORITIES FOR A VULNERABLE UNDERSERVED COMMUNITY IN UGANDA, AFRICA USING COMMUNITY BASED PARTICIPATORY RESEARCH AND A PHOTOVOICE APPROACH by 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 Copyright 2020 by Cheryl Finch Wallin ii 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