FEEDBACK SESSIONS WITH THE PARTICIPATING NGOs

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nformed consent

When looking at ethical issues in relation to research, informed consent is one of the categories discussed by Leedy & Ormrod (2005:101) thus: “Research participants should be told the nature of the study to be conducted and given the choice of participating or not Furthermore, they should be told that, if they agree to participate, they have the right to withdraw from the study at any time. Any participation in a study should be strictly voluntary”. 56 During my first formal meeting with the prospective research participants, their guardians and care givers, I explained the nature of the research I was undertaking. I emphasized that participation was strictly voluntary, and it could be withdrawn at any time without any explanation whatsoever. The importance and appreciation of the potential participants’ contribution through their stories and experiences, freely narrated, was explained and emphasized.
The avoidance of any kind of deception or bias in reporting the children’s stories was assured. In giving this assurance, I was guided by the information contained in the ‘Informed consent’ form which I designed and was approved by the Research ethics committee of the University of Pretoria. I also read and explained the information contained in the ‘Informed consent’ form (Appendix 2), and allowed time for questions and/or clarifications. A period of seven days was agreed upon as sufficient time for guardians and children to consider whether to participate or not. After due consideration of the invitation the majority of the children volunteered to participate while two declined. The guardians then signed individual ‘informed consent’ forms for each prospective participant.

Care

Care is at the core of this research project. By the word care, I mean giving serious attention to all the human needs of the OVC living in urban Zambia. Care also implies respect and empathy for the children who are generally stigmatized and traumatized in their marginalised situation. Respecting the children also implies giving the children a voice to share their stories and experiences. It is also important to treat the orphan as a person and especially as a child. This attitude sends the positive message that children are important and their views matter in issues concerning them. Assigning proper meaning to the concept ‘care’ in this research is a process of construction that indicates what care means to the marginalized children living in urban Zambia. It is also a deconstruction of how various groups or organizations, for instance: the government, religious organizations, and the church understand care (Van Nierkerk (2006:12).

THE STORY OF URBAN ZAMBIA

The large urban population in Zambia stems from continuous urban migration from rural areas to urban centres (cf Lungwangwa & Macwan’gi 2004:5; National AIDS council 2010:4). People travel to cities and towns from all corners of Zambia hoping for a better life, only to find a worse situation with no jobs, housing, food and other human basic needs. Rather than trek back to the rural areas, they settle in the outskirts of the urban centres in illegal unplanned settlements and structures. Lusaka like the rest of the Zambian urban centres, is surrounded by many such settlements. These settlements are commonly known as shanty compounds or slums. The compounds accommodate large populations of vulnerable people and children. One such example is Lusaka’s Ng’ombe compound of about 6 square kilometers with a population of close to 90000. 87% of the people here are classified as very poor, 10% as poor and only 3% are middle class (Ng’ombe RDC office: 2004).

Needs in urban areas

The needs in these areas are numerous. They range from basic human needs of food, water, shelter to absent or deplorable infrastructures of roads, sanitation and drainage systems (cf Ngulube 1989:116-119; Joint USAID/UNICEF/SIDA project 1999). Over the last ten years, I have learned firsthand of the high levels of poverty, unemployment, disease, illiteracy and other needs, during my pastoral work in Ng’ombe compound. 65 The majority of the children participating in this research and their families live in these compounds, where they were born and brought up. Furthermore, the majority of the care giving NGOs, both FBOs and CBOs are located in urban areas of Zambia. The reason for this is that most of the OVC live there. Two of the three NGOs involved in this research are also based in two of these urban compounds. The third is based in one of the high density residential areas of Lusaka urban. In the process of identifying and describing these NGOs, I examine how they were established and grew to be able to help many marginalized children.

IDENTIFYING CARE GIVING NGOs

In the mid-1980s various NGOs were established to provide care for the growing population of the OVC as a consequence of the HIV and AIDS epidemic (National AIDS council 2010:20). The majority of the care giving NGOs, which include the 3 involved in this study, were established in response to the epidemic crisis. The process of identifying suitable care giving NGOs and children participants for this research was a lengthy one. It started in February 2009 and ended in September, 2010. I identified two of the NGOs with the help of the Ministry of Sport, Youth and Child Development. This is the government ministry involved with planning and policy matters concerning all children in Zambia. I made three visits to this ministry in February, 2009 with three objectives: • To get official government literature pertaining to the OVC living in Zambia. 66 • To get guidance concerning research with children affected and/or infected with HIV and AIDS, vis-à-vis ethical issues and child protection policies.
In Zambia, matters concerning children are sensitive due to existing instances of child abuse, exploitation and child trafficking. • To be directed to the existing care giving NGOs within Lusaka urban that I could work with in my research. In seeking the Ministry’s guidance, I wanted to be certain that I wasn’t infringing on any laws in embarking on this type of research which involves children affected and/or infected by HIV and AIDS. The ministry directed me to a number of FBOs and CBOs involved in the care of the OVC within Lusaka urban. From the organizations that I visited and interacted with, I choose three. The two faith based organizations are: Cheshire Homes Society of Zambia: Divine Providence Home for the Aged, Homeless & Orphans and St. Lawrence Home of Hope. The third, which is community based, is Kondwa Day Centre for Orphans (Seko House). The founder / director of this organization was introduced to me by a friend from my church.

TABLE OF CONTENTS :

• CHAPTER
  • 1.1 INTRODUCTION
  • 1.2 CHILDREN ORPHANED BY AIDS ON THE STREETS
  • 1.3 BACKGROUND TO THE RESEARH
  • 1.3.1 Statistical information of children orphaned by AIDS
  • 1.3.2 Comparative regional figures of children orphaned by AIDS
  • 1.4 INTEREST AND MOTIVATION
  • 1.5 RESEARCH TOPIC
  • 1.6 LITERATURE REVIEW
  • 1.6.1 Review of research done in Zambia
  • 1.7 RELEVANCE OF THE STUDY
  • 1.8 RESEARCH QUESTION
  • 1.8.1 Aims and objectives
  • 1.9 RESEARCH PARADIGM AND METHODOLOGY
  • 1.9.1 Positioning
  • 1.9.2 Practical theology
  • 1.9.3 Narrative approach
  • 1.9.3.1 Co-researcher
  • 1.9.3.2 Researcher
  • 1.9.4 Postmodern paradigm
  • 1.9.5 Social constructionism
  • 1.9.6 Qualitative research
  • 1.10 THE CONTEXT OF THE RESEARCH
  • 1.11 RESEARCH METHODOLODY
  • 1.11.1 Research method
  • 1.11.1.1 Action
  • 1.11.1.2 Background
  • 1.11.1.3 Development
  • 1.11.1.4 Climax
  • 1.11.1.5 Ending
  • 1.12 RESEARCH DELIMITATIONS
  • 1.13 ETHICS IN RESEARCH
  • 1.13.1 Informed consent
  • 1.13.2 Confidentiality and anonymity
  • 1.14 CHALLENGES
  • 1.15 KEY CONCEPTS
  • 1.16 RESEARCH CHAPTERS
  • 1.17 CLOSING REMARKS
• CHAPTER
  • 2.1 INTRODUCTION
  • 2.2 THE STORY OF URBAN ZAMBIA
  • 2.2.1 Needs in urban areas
  • 2.3 IDENTIFYING CARE GIVING NGOs
  • 2.3.1 Criteria for selecting participating NGOs
  • 2.3.3 Cheshire Homes Society: Divine Providence Home
  • 2.3.2.1 Research participants living in Divine Providence Home
  • 2.3.3 St Lawrence Home of Hope
  • 2.3.3.1 Research participants living on the streets
  • 2.3.4 Kondwa Day Centre for Orphans (Seko House)
  • 2.3.4.1 Research participants living in Seko House
  • 2.3.5 Similarities and differences among the NGOs
  • 2.4 PROCESS OF IDENTIFYING CO-RESEARCHERS
  • 2.4.1 Criteria of selecting research participants
  • 2.4.2 Introductory sessions
  • 2.4.2.1 Session 1: Street children at Soweto market
  • 2.4.2.2 Session 2: Divine Providence Home
  • 2.4.2.3 Session 3: Seko House
  • 2.4.4 Reflection on the three sessions
  • 2.5 SELECTION OF STORIES: DESIGN, SAMPLING AND DATA COLLECTION
  • 2.5.1 Sampling
  • 2.5.2 Data collection strategies
  • 2.6 CO-RESEARCHERS SPEAK
  • 2.6.1 Babra – ‘When I wanted to bath they were saying ‘go back to mother’s death’
  • 2.6.2 Brenader Sasha – ‘When my father died he took everything, we where only left with one chair and our cloths’
  • 2.6.3 Katty Perry – ‘I was sleeping, he came and removed his pajamas he wanted to sleep with me then I screamed and ran away’
  • 2.6.4 Preta – ‘After my mother died, my brothers and sisters left me alone with my father’
  • 2.6.5 Albert – ‘Life is good here because the Sisters are giving us everything’
  • 2.6.6 Horace – ‘I can’t say that my father is dead, but I don’t know where he is now, he just left’
  • 2.6.7 Jatropha – ‘I once stayed at St. Lawrence Home then my friend told me ‘let us go to town’”
  • 2.6.8 Oliver – ‘When I started my education, that’s when I thanked God’
  • 2.6.9 Villa – ‘When I was in the compound there was no one to take Care of me’
  • 2.7 REFLECTIONS
  • 2.8 CLOSING REMARKS
• CHAPTER
  • 3.1 INTRODUCTION
  • 3.2 VIEWS ON OVC RESEARCH UNDERTAKEN IN AFRICA
  • 3.3 TOWARDS UNDERSTANDING A WORLD VIEW
  • 3.3.1 Understanding an African world view
  • 3.3.1.1 African traditional culture
  • 3.3.1.2 Children in the African culture
  • 3.3.1.3 The extended family
  • 3.4 AFRICAN THEOLOGY
  • 3.5 DISCOURSES IN THIS RESEARCH
  • 3.5.1 Towards understanding a discourse
  • 3.5.2 Discourse of multi ethnicity
  • 3.5.3 Urbanization discourses
  • 3.5.3.1 Urbanization and disruption of African family
  • 3.5.3.2 Urbanization and Western influence
  • 3.5.3.3 Urbanization and Western social amenities
  • 3.5.3.4 Urbanization and African child care discourse
  • 3.6 CARE DISCOURSES
  • 3.6.1 Views on care by the OVC
  • 3.6.2 Care and/or lack of care for the OVC
  • 3.6.2.1 psychosocial needs of orphans
  • 3.6.2.2 Trauma of an orphan family
  • 3.6.2.3 Stigmatization
  • 3.6.2.4 Discrimination
  • 3.7 OVERVIEW OF RESPONSES TO ORPHAN CRISIS
  • 3.7.1 Government response to the OVC crisis
  • 3.7.2 Non-governmental organizations care response
  • 3.8 CLOSING REMARKS
• CHAPTER
  • 4.1 INTRODUCTION
  • 4.2 STORIES OF OTHER ORPHANED CHILDREN
  • 4.2.1 Difficulties in accessing health care
  • 4.2.2 Problems faced with education
  • 4.3 LISTENING TO CO-RESEARCHERS’ EXPERIENCES OF CARE
  • 4.3.1 Co-researchers’ experience of extended family care
  • 4.3.2 Co-researches’ experiences of NGO’s care
  • 4.3.3 Reflections on co-researchers’ experience NGOs’ care
  • 4.4 FEEDBACK SESSIONS WITH THE PARTICIPATING NGOs
  • 4.5 TOWARDS UNDERSTANDING CARE
  • 4.5.1 Care described in various forms
  • 4.5.2 Care narratives from this study
  • 4.5.2.1 Destabilizing care
  • 4.5.2.2 Torturous care
  • 4.5.2.3 Conditional care
  • 4.5.2.4 Burdensome care
  • 4.5.2.5 Unconditional care
  • 4.5.2.6 Community care
  • 4.5.2.7 Empowering care
  • 4.5.2.8 Present care
  • 4.5.2.9 Storying care
  • 4.6 LESSONS LEARNED
  • 4.7 CLOSING REMARKS
• CHAPTER
  • 5.1 INTRODUCTION
  • 5.2 THE PROCESS OF ARRIVING AT THE OUTCOMES
  • 5.2.1 Narratives of good care
  • 5.2.2 Stories of other care
  • 5.2.3 Silent narratives
  • 5.2.4 Faith in God
  • 5.2.5 Children’s stories of preferred care
  • 5.2.5.1 Orphaned siblings should live together
  • 5.2.5.2 State should care for the OVC
  • 5.2.6 Institutional care
  • 5.3 A FRESH UNDERSTANDING OF OVC CRISIS
  • 5.3.1 Reactivation of the African care system
  • 5.3.2 Children’s views to be taken seriously
  • 5.3.3 The pastoral care challenge
  • 5.3.4 Narrative outcome
  • 5.3.5 Personal outcome
  • 5.4 CLOSING REMARKS
• CHAPTER
  • 6.1 INTRODUCTION
  • 6.2 THINGS I OVERLOOKED IN THE RESEARCH PROCESS
  • 6.3 CRITICAL REFLECTION ON ETHICAL MATTERS
  • 6.4 WHO ARE THE BENEFICIARIES OF THE RESEARCH
  • 6.5 AREAS FOR FURTHER RESEARCH
  • 6.6 EVALUATION CRITERIA OF THE RESEARCH PROCESS
  • 6.6.1 Reliability
  • 6.6.2 Validity
  • 6.6.3 Credibility
  • 6.6.4 Transferability
  • 6.6.5 Consistency
  • 6.7 NARRATIVE EVALUATION QUESTIONS
  • 6.7.1 Was space created by the study for new stories and restorying?
  • 6.7.2 Did the researcher listen and report the stories truthfully?
  • 6.7.3 How did the researcher involve others in the Interpretation?
  • 6.7.4 Was transformation/reframing effected by the research process?
  • 6.7.5 How will the dissemination of the research be done?
  • 6.8 CLOSURE OF THE RESEARCH PROCESS
  • BIBLIOGRAPHY
  • APPENDIX 1: CONSENT LETTER TO THE CARE GIVING NGOS
  • APPENDIX 2: INFORMED CONSENT
  • APPENDIX 3: CONSENT FORM FOR CO-RESEARCHERS/PARTICIPANTS
  • APPENDIX 4: GUIDING QUESTIONS FOR CO-RESEARCHERS’ INTERVIEWS
  • APPENDIX 5: INTERDISCIPLINARY TEAM REFLECTIONS

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THE SILENT VOICES OF ORPHANS AND VULNERABLE CHILDREN LIVING IN THE HIV AND AIDS ENVIRONMENT IN URBAN ZAMBIA: A PASTORAL CARE CHALLENGE