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

Description

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 Contents Chapter 1: Introduction 1.1 Historical Use of the Concept `Hard to Reach´ 1.1.1 Who Do We Call Hard to Reach? 1.1.2 Dimensions of Hard to Reach 1.2 Approaches to Understanding and Reaching the Hard to Reach 1.3 Conceptualizing `Hidden´ People 1.4 Examples from Research with People Labelled Hard to Reach 1.5 What Are the Implications of Using the Term Hard to Reach? 1.5.1 Whose Perspective Is Included/Excluded? 1.5.2 Whose Responsibility Is It to Reach Who? 1.6 Understanding the Hard to Reach Through the Lens of the Epistemology of Ignorance 1.6.1 Ignorance as Propositional 1.6.2 Ignorance as Agential 1.6.3 Ignorance as Structural 1.6.4 An Integrated Approach to the Epistemology of Ignorance 1.7 HIV Research and the Epistemology of Ignorance 1.8 Rethinking `Hard to Reach´ References Chapter 2: Context and Storytelling 2.1 Reflections on Learning Moments from Working with LGBT Persons in Jamaica 2.2 In Conversation-Nicolette Richardson (Née Jones) 2.3 Applying Concepts of Context and Storytelling to Understand the Hard to Reach 2.4 Context 2.4.1 Conceptualizing Context 2.4.2 How Our Work Was Able to Address Context 2.4.3 How Our Work Was Unable to Address Context 2.5 Storytelling 2.6 Rethinking Hard to Reach Through a Focus on Context and Storytelling References Chapter 3: Cultural Humility 3.1 Learning Moments Working in Northern and Indigenous Communities 3.2 In Conversation-Candice Lys 3.3 Applying a Cultural Humility Approach and Learning from Indigenous Approaches 3.4 Conceptualizing Cultural Humility 3.5 Developing Cultural Humility 3.6 Centering Indigenous Knowledge 3.6.1 Decolonization and Indigenous Research Protocols 3.6.2 Storytelling, Theory, and Sources of Knowledge 3.6.3 Harmony, Balance, and Medicine Wheel Teachings 3.6.4 Land-Based Knowledge 3.6.5 Love and Reciprocity 3.7 Rethinking `Hard to Reach´ Through the Lens of Cultural Humility References Chapter 4: Critical Hope 4.1 Learning from Work with Transgender Women of Colour in Toronto, Canada 4.2 In Conversation-Yasmeen Persad 4.3 Applying Critical Hopefulness and Self-Compassion to Advancing Research with Socially Excluded People 4.4 Hope and Critical Hopefulness 4.4.1 Understanding Hope 4.4.2 Pedagogies of Critical Hope 4.5 Self-Compassion 4.6 Rethinking Hard to Reach Through Critical Hope References Chapter 5: Imagination and Possibility 5.1 Reflections on a Participatory Theatre Project with an LGBT Community Agency, The Rock of Hope, in Eswatini 5.2 In Conversation: Veli Madau 5.3 Applying Concepts of Imagination and Possibility to Work with Socially Excluded Populations 5.3.1 Participatory Theatre and Vernacular Knowledge 5.3.2 Broadening the Methodological Imagination 5.4 Rethinking Hard to Reach Through Imagination and Possibility References Chapter 6: Love, Intimate Inquiry and the Beloved Community 6.1 Reflections on Learning with Internally Displaced Women in Post-Earthquake Haiti 6.2 In Conversation: CarolAnn Daniel 6.3 Love, Intimate Inquiry and the Beloved Community 6.3.1 Conceptualizing Love 6.3.2 Conceptualizing the Beloved Community 6.3.3 Intimate Inquiry 6.4 Rethinking Hard to Reach Through Love, Beloved Community and Intimate Inquiry References Chapter 7: Conclusions and Moving Forward 7.1 Key Principles When Working with Persons Categorized as Hard to Reach 7.1.1 Context Matters 7.1.2 Hope Matters 7.1.3 Community Matters 7.2 Recommendations for Future Research 7.2.1 Cultural Humility 7.2.2 Arts-Based and Creative Storytelling Methods 7.2.3 Action-oriented Research to Benefit Communities 7.3 The Epistemology of Ignorance and the Concept of the Hard to Reach 7.4 Conclusion: Moving Beyond Vulnerability Toward an Enabling Environment References