Every story has a beginning: Background information on HIV and AIDS

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INTRODUCTION

I developed an interest in the study of the impact of HIV and AIDS in 1993 when Iworked for the South African Council of Churches (Vaal Branch). As one of the personnel who worked at their Education and Development desk, I had to undergo rigorous preventive education training in HIV and AIDS and related issues.

Every story has a beginning: Background information on HIV and AIDS

For this research to be concrete, it would be very important to introduce background knowledge and the impact that HIV and AIDS has had in our world. It has been 28 years (1981-2009) since the discovery of the Acquired Immunodeficiency Syndrome (AIDS). It was in the USA in 1981 that a rare form of pneumonis and a rare skin disease appeared simultaneously in several male patients (Van Dyk 2001:5). As all these patients were young homosexual men, this new disease was called ‘homosexual’ illness. It was in 1983 after further research that it was discovered that this disease is caused by a lymphadenophathy-associated virus (LAV). As late as 1986 this virus became known as the human immunodeficiency virus (HIV).

Human reactions: Adding more pain to the story

The human reaction to those infected by the virus was to stigmatise and label them as promiscuous. This was not different in churches, especially among those with a fundamentalist foundation that preached individual salvation and moral purity above social and communal sins. These were the types of churches which would condemn a drunkard or adulterer, but be silent when apartheid destroyed the lives of Blacks in South Africa.

Our Continent, Africa

Africa has 70-75% of the people living with HIV and AIDS in the whole world.Between 80-90% of all HIV and AIDS-related deaths occur here, as well as 95% of HIV and AIDS orphans in the world. In this continent, there are more women living with HIV and AIDS than men. I agree with the statement that I read in one pamphlet saying that ‘in Africa HIV/AIDS has the face of poor black woman’. This implies that in this continent, HIV and AIDS infects, affects and kills more women than men.

CHAPTER 1:EVERY STORY HAS A BEGINNING
1 INTRODUCTION
1.1 Every story has a beginning: Background information on HIV and AIDS
1.2 Human reaction: Adding more pain to the story.
1.3 A “holocaust” story: The seriousness of HIV and AIDS in our world
1.3.1 World statistics
1.3.2 Our continent, Africa
1.3.3 The Sub-Saharan African HIV and AIDS statistics
1.3.4 South African HIV and AIDS statistics
1.3.5 Provincial indicators
2 EVERY STORY HAS A CONTEXT
2.1 Description of specific context
2.2 The Tumahole community
2.3 Solution: “One step at a time”
2.4 The shock of my life: “My sister is HIV/AIDS infected”
3 THOSE INFECTED AND AFFECTED BY HIV AND AIDS: LISTEN TO UNHEARD STORIES OF CHRISTIAN WOMEN
3.1 Why is telling these stories necessary?
3.2 Focus area
4 THICKENING THE STORY
4.1 The overall aim and objectives of the research project
4.2 Facilitating the telling of a story and the exploration thereof
4.2.1 Post-modernism approach
4.2.1.1 Realities are socially constructed
4.2.1.2 Realities are constituted through language
4.2.1.3 There are no essential truths
4.2.1.4 Realities are organised and maintained through narratives
4.2.2 The good researcher is the good listener
4.2.3 Social-constructionist approach
4.3 Postfoundationalist practical theology
4.3.1 Epistemological understanding with regard to practical theological researc
4.3.1.1 What is theology?
4.3.1.2 Practical theology
4.3.1.3 Pastoral Care
4.3.2 My epistemological position as story teller
4.4 Steps in postfoundationalist practical theology research
4.4.1 In-context experiences are listened to and described
4.4.2 Ethical guidelines
4.4.2.1 Avoid causing harm to my co-researchers
4.4.2.2 Informed consent
4.4.2.3 Avoid deception of my co-researchers
4.4.2.4 Not violating the privacy of my co-researchers
4.4.2.5 Release or publication of the research findings
4.5 Telling the story:
4.5.1 Telling the story: Interpretations of experiences are made, described and developed in collaboration with co-researchers
4.5.2 Telling the story: A description of experiences as it is continually informed by traditions of interpretation
4.5.3 Telling the story: A reflection on the religious and spiritual aspects, especially
on God’s presence
4.5.4 Telling the story: A description of experience, thickened through interdisciplinary investigation
4.5.5 Telling the story: Development of alternative interpretations, which point beyond local community
5 CONCLUSION
CHAPTER 2: “ALL I EVER WANTED…”
1 THE ART AND POWER OF ASKING QUESTIONS
2 CONVERSATIONAL INTERVIEWS:
2.1 Unstructured in essence
2.2 Making use of non-directive questions
2.3 The importance of listening
2.3.1 Deconstructive listening
2.4 Reporting
3 CONTEXT OF THIS RESEARCH
3.1 Tumahole: The background of the community
3.2 Co-researchers and access to them
4 STORIES OF HIV and AIDS
4.1 The story of MM
4.1.1 Background information on MM and her family
4.1.2 Interview with MM
4.1.3 Evolving themes of MM’s story
4.2 The story of MS
4.2.1 Background information on MS and her family
4.2.2 Visit to MS
4.2.3 Interview with MS
4.2.4 Keeping in touch with MS
4.2.5 Evolving themes from MS’ story
4.3 The story of MX
4.3.1 Background information of MX and her family
4.3.2 Interview with MX
4.3.3 Continued contact with MX
4.3.4 Evolving themes from MX’ story:
5 VERIFICATION OF EVOLVING THEMES FROM CO-RESEARCHERS STORIES
6 CONCLUSION
CHAPTER 3 “THE BEGINNING OF THE STORY AT THE END…”
1 INTRODUCTION
1.1 Different roles by each member of MDT
1.2 Exploring the evolved themes
1.2.1 Different stages of experiencing HIV and AIDS infection
1.2.1.1 “Nobody will know, nobody has to know”
1.2.1.2 “No secret will remain hidden forever”
1.2.1.3 Denial of HIV status: “I do not know what you are talking about”
1.2.1.4 Acceptance and forgiveness: “We are in this together”
1.2.1.5 Negotiation: “If things will turn out differently…”
1.2.1.6 When all has been said and done: “ till death do us apart…”
1.2.2 HIV and AIDS and Gender
1.2.3 Social and economic factors
2 TRADITIONS OF INTERPRETATION AND REFLECTION ON GOD TALK
2.1 Is God saying something to us about HIV and AIDS?
2.1.1 Divine presence amid human suffering
2.1.2 Where is God when HIV and AIDS is killing His people?
2.1.2.1 Is God punishing His children with HIV and AIDS?
2.1.2.2 HIV and AIDS is not a punishment, but a consequence of freewill
2.1.2.3 God neither sends HIV nor permits it but He is powerless to prevent it
3 THEOLOGICAL DISCOURSES ON THE ISSUES AS THEY CHALLENGE THE COMMUNITY OF TUMAHOLE
3.1 Church and Sexuality
3.2 HIV and AIDS and Stigma
3.2.1 The internal and external contexts of stigma
3.3 HIV and AIDS and preventive education: “It is a matter of choice”
3.4 HIV and AIDS reveals our fear and lack of trust in God’s power
4 SOCIO-ECONOMIC REFLECTIONS
4.1 HIV and AIDS affects mostly the poor and underprivileged
4.2 More about HIV and AIDS and gender
4.2.1 Some contributors on why more women are being infected
4.2.1.1 Physiological differences
4.2.1.2 Social differences
4.2.1.3 Cultural norms
4.2.1.4 Socio-economic factors
4.2.1.5 Religious factors
4.3 Socio-economic impact of HIV and AIDS on societies
4.3.1 HIV and AIDS and the high cost of the funerals
4.3.2 The plight of orphans and vulnerable children
4.3.2.1 Grandparent-headed households
4.3.2.2 Care by relatives
4.3.2.3 Child-headed households
4.3.3 Caring for care-givers
5 CONCLUSION.
CHAPTER 4: SHOUTING FOR HOPE: PASTORAL CARE IN THE CONTEXT OF MY CO-RESEARCHERS
1 INTRODUCTION
2 A THEOLOGY OF PASTORAL CARE IN RELATION TO HIV AND AIDS
2.1 Pastoral Care as Preventive Education
2.1.1 Role of men in Preventive Education
2.1.2 The “NEW” ABC of Preventive Education
2.1.2.1 Attitude
2.1.2.2 Behaviour
2.1.2.3 Character
2.1.2.4 SAVE approach
2.2 Pastoral Care as the destigmatization of HIV and AIDS
2.2.1 Theological root of stigmatisation of people with HIV and AIDS
2.2.2 Practical theology in the context of HIV and AIDS and stigma
2.2.3 Compassion as a remedy to stigma
2.2.4 The Imago Dei and human dignity in the face of HIV and AIDS infection
2.2.5 The unconditional acceptance of those with HIV and AIDS
2.3 Pastoral Care as combating HIV and AIDS through economic empowerment
2.3.1 Skills development and job creation
2.3.2 Possibility of low-cost but dignified funerals
2.3.2.1 Facilitating the reduction of the high cost of the funerals
2.3.2.2 Other ways of reducing funeral costs will be the following
2.3.2.3 Another alternative: Cremation and the African culture
2.4 Pastoral Care as caring for orphans and vulnerable children
2.4.1 Access to basic education
2.4.2 Foster care and adopt-a-child program
2.4.3 Child support grant
2.4.4 Post-traumatic stress syndrome and counselling
2.5 Pastoral Care as ministry of presence to those living with HIV and AIDS
2.5.1 Sacramental ministry
2.6 Pastoral Care as counselling to those living with HIV and AIDS
2.6.1 To help the infected persons to come to terms with their situations
2.6.2 To promote coping strategies for the infected and the affected, including preventing and reducing HIV and AIDS transmission
2.6.3 Different stages of HIV and AIDS infection require different counselling approaches
2.7 Pastoral Care as caring for care-givers
3 CONCLUSION
CHAPTER 5: LOOKING BACK, TO LOOK FORWARD
1 INTRODUCTION
1.1 Critical self-reflection
2 LOOKING BACK
2.1 My own experiences
2.2 Lessons learnt from my co-researchers
2.2.1 Forgiveness is a key to one’s healing
2.2.2 “Till death do us part”: Caring for partners to the end
2.2.3 “Total disclosure brings healing”: Importance of disclosure
2.3 Co-researcher, MS, succumbs to her final calling to the Gloryland
2.4 Co-researcher, MM, is a leader of interdenominational intercessors
2.5 Co-researcher, MX, divorced and remarried and is a community peer counsellor
3 PICKING UP THE PIECES
4 MOVING FORWARD
4.1 Theology of HIV and AIDS resilience
4.1.1 Pastoral Care as resilience during pre-infection stage
4.1.2 Pastoral Care as resilience during infection stage
4.1.2.1 Pastoral Care to people during diagnosed phase
4.1.2.2 Pastoral Care during symptomatic phase
4.1.2.3 Pastoral Care to people who are in the full-blown AIDS phase
4.1.2.4 Pastoral Care to those in the terminal phase
4.1.2.5 Pastoral Care as resilience during and in the post-bereavement phase
4.2 Pastoral Care as the embodiment of Christ to those infected and affected by HIV and AIDS
4.2.1 Friendly feet
4.2.2 Anointed hands
5 RECOMMENDATION
5.1 Towards a resilient theology of HIV and AIDS
5.1.1 Pastoral Care as a liberation of both men and women from ‘religious’ and ‘cultural’ enslaving and enslavements
5.1.2 Pastoral Care towards orphans and vulnerable children
5.1.3 Pastoral Care as caring for the care-givers
5.1.4 Pastoral Care as a better health for all: towards a healthy living
5.1.5 Pastoral Care as greening our environment: “Each HIV and AIDS related death leads to one new ‘tree of life’ planted”
6 NEW NARRATIVE
6.1 Has the aim been met?
6.2 Have the objectives been met?
6.2.1 To facilitate the unstoried parts of the narratives to be heard
6.2.2 To research alternative ways and means of making these stories known
6.2.3 To strengthen networks of organisations and churches working among infected and affected people
6.2.4 To disseminate research findings on the unheard stories
7 FINALLY
8 BIBLIOGRAPHY