Chatterley, Marion Frances (2017) Reflecting theologically on the impact of HIV in Edinburgh with particular reference to infected people, health and social care professionals, Scottish churches and local agency, Waverley Care. DPT thesis. http://theses.gla.ac.uk/7875/ Copyright and moral rights for this work are retained by the author A copy can be downloaded for personal non-commercial research or study, without prior permission or charge This work cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given Glasgow Theses Service http://theses.gla.ac.uk/ [email protected] Reflecting theologically on the impact of HIV in Edinburgh with particular reference to infected people, health and social care professionals, Scottish churches and local agency, Waverley Care. Reverend Canon Marion Frances Chatterley Submitted in fulfilment of the requirements for the Degree of Doctor of Practical Theology Theology and Religious Studies School of Critical Studies College of Arts University of Glasgow June 2016 2 Abstract This thesis discusses the impact of HIV in Edinburgh on infected individuals, professionals and the Scottish churches. It is grounded in contextual practical theology, offering reflexive responses to evidence gleaned from oral histories. The thesis documents the development of a local agency, Waverley Care, exploring the influences and pressures that contributed to its distinctive ethos. The author was employed as chaplain to people living with HIV from 2000 – 2016; the pastoral and professional relationships that emerged from that ministry form the foundation for the research. Unstructured interviews were conducted and Interpretative Phenomenological Analysis was used to analyse, interpret and reflect on the resultant material. Personal stories and perspectives were shared, both by people living with HIV and by professionals in the field. The impact of living with HIV is shown by discussing issues such as the ongoing impact of HIV-related stigma and the challenges associated with living long-term with the condition. Attention is paid to the challenges arising as a result of multiple bereavements and the resultant spiritual questions that emerge. The impact on physicians is also evidenced, in particular the transition from treating patients before the advent of effective medication, to the situation in 2016 when HIV has been re-classified as a chronic illness. Recommendations on areas of ongoing concern are made for decision makers in public health, the churches and Waverley Care. Deep reflective analysis is offered, using the Stations of the Cross and models from bereavement work to provide frameworks for understanding. The contribution of the Scottish churches to the establishment of support services is recognised; the churches’ influence, both positive and negative on discourse on human sexuality is discussed. The research evidences the impact of the provision of spiritual care within a secular agency, showing that it is possible to create sacred space and to deliver a sacramental ministry within a non-church setting. Keywords: HIV; Edinburgh; contextual theology; reflexivity; oral history; phenomenology; chaplaincy; harm reduction; stigma; bereavement; spirituality; Waverley Care 3 Table of Contents: Abstract 2 Acknowledgment 6 Author’s declaration 7 Introduction 8 0.1 Locus as a researcher 8 0.2 Design of this thesis 9 0.3 Aims of the research 13 Chapter 1 Approaching the research project 15 1.1 The context 15 1.2 Historical background 15 1.3 HIV and theology 16 1.4 Practical theology 17 1.4.1 Material for reflection 19 1.4.2 Reflexivity in the research process 20 1.5 Research methodology 20 1.5.1 The living human documents 20 1.5.2 The process of gathering data 23 1.5.3 Checks and balances 25 1.5.4 Frameworks for the research 25 1.5.5 Phenomenology 26 1.5.6 Hermeneutics 30 1.5.7 Hermeneutic phenomenology 32 1.5.8 Interpretative Phenomenological Analysis 33 1.6 Core sources of historical information 35 1.7 Other relevant research within Edinburgh 36 1.8 Ethical considerations 37 1.9 Naming my role and its remit 40 1.9.1 Chaplaincy within the hospice setting 41 1.9.2 Chaplaincy as outreach 43 1.9.3 Working as a chaplain 45 1.9.4 Spiritual and pastoral care co-ordinator 46 1.9.5 Spiritual care and faith communities 48 1.9.6 A distinctive ministry 49 1.10 My personal contribution to the role 50 Chapter 2 Background and history 52 2.1 HIV in Edinburgh: the drug related story 53 2.1.1 Fear for the wider population 56 2.1.2 The introduction of harm reduction 58 2.1.3 Management of drug using patients 62 2.2 The impact on gay men 64 2.3 Community responses 66 2.3.1 Positive Help 66 2.3.2 SAFE 68 2.3.3 Church of Scotland services 68 2.3.4 Harm reduction and the churches 70 2.4 Wider faith community engagement 72 2.4.1 Churches and sexual health education 72 2.5 The emergence of other local support services 74 2.6 The NAMES project 74 2.7 Waverley Care 75 2.7.1 Waverley Care Solas 78 2.7.2 Spiritual care within Waverley Care 79 4 2.8 A sexually transmitted disease 83 2.8.1 Public health responses 83 2.9 Summing up 85 Chapter 3: Diagnosis, Stigma and Mortality 87 3.1 Introduction 87 3.2 The earliest indications of a problem 88 3.3 The impact of accurate testing 90 3.3.1 Testing and Men who have sex with Men 92 3.3.1.1 Chemsex – a recent development 94 3.4 The experience of receiving a diagnosis 96 3.5 Responding to a positive diagnosis 100 3.5.1 The influence of spiritual experience 100 3.5.2 HIV as an agent for positive change 103 3.5.3 Alcohol and sex as coping strategies 104 3.5.4 Making lifestyle changes 105 3.5.5 Impact on sexual relationships 106 3.6 Stigma 108 3.6.1 Parallels with leprosy 109 3.6.2 Stigma in medical settings 110 3.6.3 Stigma based on pre-conceived assumptions 112 3.6.4 Stigma within the community 114 3.6.5 Stigma and families 115 3.6.6 Stigma in the public arena 116 3.6.7 Summarising 117 3.7 Mortality 118 3.7.1 Facing a bleak prognosis 120 3.7.2 Moving from active treatment 122 3.7.3 Defying the prognosis 124 3.7.4 Forward planning 125 3.7.5 Journeying towards death 126 3.7.6 The impact of death 127 Chapter 4: Living with HIV 131 4.1 Creating community 131 4.1.1 A community that takes care of itself 131 4.1.2 A community that is church-like 134 4.1.3 Bringing the ministry of the church 136 4.2 Unconditional support 138 4.3 HIV and relationships 140 4.4 Personal determination 142 4.5 The impact on health and social care professionals 147 4.5.1 The challenge of managing drug users 147 4.5.2 The challenges within sexual health 150 4.6 Waverley Care and its ethos 154 4.6.1 The wider impact on staff 156 4.7 The Christian influences on HIV care and support 158 Chapter 5: Reflecting theologically on ministry within a secular context 163 5.1 A Christian ministry within a secular agency 163 5.1.1 Expressions of ministry 164 5.1.2 Creating community 164 5.1.3 Creating sacred space 165 5.1.4 Sacramental experience 166 5.1.5 Marking significant life events 166 5 5.1.6 Ministry as mission 168 5.2 The impact on my spiritual journey 170 5.2.1 Reflection through the lens of the Stations of the Cross 170 5.3 Locating the ministry within an ecclesial framework 175 5.3.1 The diaconal nature of the ministry 176 5.3.2 The priestly nature of the ministry 177 5.3.3 The personal experience of the ministry 177 5.4 Grounding the reflections in scripture 178 5.4.1 An expression of faith 178 5.4.2 A time for hope 180 5.4.3 An experience of love 182 5.5 John Bowlby and attachment theory 183 5.5.1 Case study on attachment 184 5.6 Using bereavement research 187 5.6.1 Elisabeth Kübler-Ross’ stages of dying 187 5.6.1.1 Denial 188 5.6.1.2 Anger 189 5.6.1.3 Bargaining 190 5.6.1.4 Depression 190 5.6.1.5 Acceptance 191 5.6.1.6 Summing up 192 5.6.2 William Worden’s tasks of grieving 192 5.6.2.1 Accepting the diagnosis 193 5.6.2.2 Experience the reality 194 5.6.2.3 Adjust to an environment 195 5.6.2.4 Emotionally relocate 196 5.7 Using Worden to understand my personal experience 197 5.7.1 Accept the reality of the situation 198 5.7.2 Experience the reality 198 5.7.3 Adjust to the reality 199 5.7.4 Emotionally relocate 200 5.8 Highlighting the ethical issues 201 5.9 Summing up 202 Conclusion 203 Recommendations 206 Concluding Remarks 208 Appendix 1: Research participants 210 Appendix 2: Consent to the use of data 211 Bibliography 216 6 Acknowledgement I am grateful to the University of Glasgow for introducing a Doctorate in Practical Theology at just the time I was beginning to think about writing up some of my professional practice.