Working with Excluded Populations in HIV : Hard to Reach or Out of Sight?

This book, written decades into the HIV epidemic, reflects critically on the idea that the socially excluded populations often focused on in HIV research are in fact difficult to access and reach. The author broadly applies the concept ‘hard to reach’ to characterize populations that researchers find difficult to engage with. Social factors that produce marginalization and ultimately result in people choosing not to engage in research are not captured by the concept of ‘hard to reach’. Limited attention has focused on how researchers can address the social factors that result in decisions to not engage in research. Disrupting the ways in which people are conceptualized as ‘hard to reach’ so as to refocus on transforming social systems and personal values, beliefs and approaches is understudied. This book uses case examples based on HIV research with Indigenous youth, internally displaced women, LGBTQ communities in the Global North and Global South, and persons at the intersection of these identities, to identify successful approaches to working with marginalized and often vulnerable communities and groups. The chapters signal the need for attention to five key social factors when developing successful approaches: context and storytelling; cultural humility; critical hope; imagination and possibility; and love, intimate inquiry, and the beloved community, if nations, individuals and communities are to address the epidemic in a sustainable and impactful way. Acknowledgments 7 Contents 10 Chapter 1: Introduction 13 1.1 Historical Use of the Concept `Hard to Reach ́ 14 1.1.1 Who Do We Call Hard to Reach? 15 1.1.2 Dimensions of Hard to Reach 16 1.2 Approaches to Understanding and Reaching the Hard to Reach 18 1.3 Conceptualizing `Hidden ́ People 20 1.4 Examples from Research with People Labelled Hard to Reach 21 1.5 What Are the Implications of Using the Term Hard to Reach? 24 1.5.1 Whose Perspective Is Included/Excluded? 25 1.5.2 Whose Responsibility Is It to Reach Who? 25 1.6 Understanding the Hard to Reach Through the Lens of the Epistemology of Ignorance 26 1.6.1 Ignorance as Propositional 26 1.6.2 Ignorance as Agential 27 1.6.3 Ignorance as Structural 29 1.6.4 An Integrated Approach to the Epistemology of Ignorance 32 1.7 HIV Research and the Epistemology of Ignorance 33 1.8 Rethinking `Hard to Reach ́ 35 References 36 Chapter 2: Context and Storytelling 40 2.1 Reflections on Learning Moments from Working with LGBT Persons in Jamaica 40 2.2 In Conversation-Nicolette Richardson (Née Jones) 45 2.3 Applying Concepts of Context and Storytelling to Understand the Hard to Reach 51 2.4 Context 52 2.4.1 Conceptualizing Context 53 2.4.2 How Our Work Was Able to Address Context 55 2.4.3 How Our Work Was Unable to Address Context 57 2.5 Storytelling 57 2.6 Rethinking Hard to Reach Through a Focus on Context and Storytelling 59 References 61 Chapter 3: Cultural Humility 64 3.1 Learning Moments Working in Northern and Indigenous Communities 64 3.2 In Conversation-Candice Lys 68 3.3 Applying a Cultural Humility Approach and Learning from Indigenous Approaches 74 3.4 Conceptualizing Cultural Humility 75 3.5 Developing Cultural Humility 77 3.6 Centering Indigenous Knowledge 78 3.6.1 Decolonization and Indigenous Research Protocols 78 3.6.2 Storytelling, Theory, and Sources of Knowledge 79 3.6.3 Harmony, Balance, and Medicine Wheel Teachings 80 3.6.4 Land-Based Knowledge 81 3.6.5 Love and Reciprocity 82 3.7 Rethinking `Hard to Reach ́ Through the Lens of Cultural Humility 83 References 84 Chapter 4: Critical Hope 86 4.1 Learning from Work with Transgender Women of Colour in Toronto, Canada 86 4.2 In Conversation-Yasmeen Persad 89 4.3 Applying Critical Hopefulness and Self-Compassion to Advancing Research with Socially Excluded People 95 4.4 Hope and Critical Hopefulness 96 4.4.1 Understanding Hope 96 4.4.2 Pedagogies of Critical Hope 97 4.5 Self-Compassion 100 4.6 Rethinking Hard to Reach Through Critical Hope 102 References 105 Chapter 5: Imagination and Possibility 107 5.1 Reflections on a Participatory Theatre Project with an LGBT Community Agency, The Rock of Hope, in Eswatini 107 5.2 In Conversation: Veli Madau 110 5.3 Applying Concepts of Imagination and Possibility to Work with Socially Excluded Populations 116 5.3.1 Participatory Theatre and Vernacular Knowledge 117 5.3.2 Broadening the Methodological Imagination 121 5.4 Rethinking Hard to Reach Through Imagination and Possibility 123 References 124 Chapter 6: Love, Intimate Inquiry and the Beloved Community 126 6.1 Reflections on Learning with Internally Displaced Women in Post-Earthquake Haiti 126 6.2 In Conversation: CarolAnn Daniel 129 6.3 Love, Intimate Inquiry and the Beloved Community 135 6.3.1 Conceptualizing Love 136 6.3.2 Conceptualizing the Beloved Community 137 6.3.3 Intimate Inquiry 141 6.4 Rethinking Hard to Reach Through Love, Beloved Community and Intimate Inquiry 144 References 145 Chapter 7: Conclusions and Moving Forward 148 7.1 Key Principles When Working with Persons Categorized as Hard to Reach 149 7.1.1 Context Matters 149 7.1.2 Hope Matters 151 7.1.3 Community Matters 154 7.2 Recommendations for Future Research 156 7.2.1 Cultural Humility 156 7.2.2 Arts-Based and Creative Storytelling Methods 157 7.2.3 Action-oriented Research to Benefit Communities 159 7.3 The Epistemology of Ignorance and the Concept of the Hard to Reach 160 7.4 Conclusion: Moving Beyond Vulnerability Toward an Enabling Environment 162 References 164