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Research design and methods
Introduction
Chapter 1 presented the research problem dealt with in this study and an outline of research objectives. Assumptions underlying this research as well as limitations of the research were also dealt with. Chapter 2 consisted of a literature review in which key issues pertaining to children affected by HIV and AIDS in Southern Africa were identified. A focal area of this review was the growing presence of CHHs in high prevalence countries. Based on this research as well as reviewing the literature, working definitions related to CHHs were developed.
This chapter begins by discussing ethical concerns in research with children. It then provides a conceptual framework for the research presented in this study. This includes methodology such as sampling procedures and the tools developed for data collection. The chapter concludes by discussing the data analysis and interpretation methods.
Ethical issues in research with children
Over the past twenty years, there has been a growing recognition of the importance of listening to children’s views and wishes. This is partly attributable to changes in attitudes towards children (Hill 1997:176). There is increasing acknowledgement that children are experts on their own lives and adults should take what children say seriously (Dunn 2004:4). For example, the UN Convention on the Rights of the Child, ratified by the government of Zimbabwe in 1990 (UNICEF 1999:2), states that ‘state parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child’ (UNICEF 1990, Article 12). Changes in the importance attached to children’s perspectives have led to changes in research concerning children (Esds 2004:2).
Ethical principles and confidentiality in research with children
There is an increasing movement towards actively involving children in research that concerns them. That is, children are regarded as participants in the research rather than merely subjects. So to speak, research is conducted with children rather than on children (Woodhead & Faulkner 2000:12). In accordance with this approach, a participatory paradigm was integral to the research being presented. An attempt was made to include participants in all aspects of the research including the research design, data collection and interpretation of findings. This posed a variety of methodological and epistemological challenges (Alderson 2000:143). These included adults’ level of tolerance towards being interviewed by youths and youths’ knowledge and perceptions regarding social phenomena potentially differing from adults.
Human rights abuses in research were common during World War Two. Human crimes were committed in the name of research on Jewish children and children with disabilities, particularly in the field of biomedical research (Grieg & Taylor 1999:37). The Nuremberg Trials resulted in an exposure of human rights abuses in the name of research. Consequently the Nuremberg Code was formed. This led to the Declaration of Helsinki on research ethics which was adopted during the World Medical Assembly in 1964. This declaration was amended in 1989 and 1996 and now includes items pertaining to children’s involvement in research (Grieg & Taylor 1999:148).
The following principles are included in the declaration: 1) Adequate information must be provided to research participants about the research and their role in the research.
2)Participants in the research must have a clear understanding that their participation is voluntary and that they can withdraw at any time. 3) Informed consent must be obtained from participants in research projects. 4) The section that refers to children specifically states that ‘when the subject is a minor, permission from the responsible relative replaces that of the subject in accordance with national legislation. Whenever the minor child is in fact able to give consent, the minor’s consent must be obtained in addition to the minor’s legal guardian (World Medical Association 1996: Paras I.9, 11)
Confidentiality and anonymity are complex issues in research with children, especially in the context of HIV and AIDS (Hausermann 1991:71). It is crucial that confidentiality and anonymity are explained to children in a way they can understand (Durrheim & Wassenaar 2002:61). This includes conveying to children that there are several people involved in the research such as research assistants, and data entry clerks. It must be made clear to children i) who will have access to the data and ii) what will happen to the data once the research is completed. Methods of ensuring confidentiality, such as removing names and other identifying information from reports, need to be explained in advance (MRS 2000:4). Difficulties regarding confidentiality arise when there is a conflict between confidentiality and the child’s exposure to risk. For example, if a researcher encountered a case of a child being sexually abused there would be both a legal and ethical obligation to take the necessary steps to protect the child. This would require the release of confidential information about the child. Releasing confidential information to protect a child from abuse conforms to the United Nations Convention of the Right of the Child’s basic concept of ‘the best interest of the child.’ The best interests of the child is an ethical requirement at all times in research concerning children, and it is crucial to convey this to children prior to obtaining their consent to participate in research.
Presently, there are no specific guidelines regarding research involving orphans and other vulnerable children affected by HIV and AIDS. Such guidelines are under development by the Horizons Programme of the Population Council (Horizons 2004). The researcher has contributed towards this process, based on experiences and findings resulting from this research.
Specific ethical issues related to child-headed households
Research on CHHs poses the difficulty that often there is no known legal guardian for the household. For the purpose of this research, consent in such situations was obtained from staff or volunteers involved in community care programmes in the vicinity of the CHH. In addition, informed consent was obtained from the head of the household. See section 3.5.3 for more detail on informed consent in the context of this research. Another complex issue, pertaining to this research is the particularly sensitive nature of information concerning HIV/AIDS. Being identified as a participant in research pertaining to the field of HIV/AIDS may result in harm, such as community stigmatisation, especially if confidentially is breached (Gray & Lyons 1994:7).
Selection and training of research assistants
The researcher was fortunate in managing to obtain a small research grant from ‘Hope HIV’ a British based charity. This made it possible to hire six youths as research assistants and to expand on the fieldwork to pursue ongoing primary data collection over a twelve-month period.
One of the key orphans support programmes operating in Bulawayo is the Salvation Army Masiye Camp. This programme has demonstrated leadership in youth development and participation and was selected by UNIADS and UNICEF in 2000 as a ‘best practice’ programme (UNAIDS 2000:33). For more information on Masiye Camp visit www.masiye.com. Through Masiye Camp, six suitable unemployed school leavers, aged 18-22, were selected and trained as research assistants. After the initial training, they were engaged for a fourteen-month contract as research assistants. All these youth were orphans themselves and had been volunteers at Masiye Camp for at least two years. They all had experience in working with hundreds of other orphans by providing psychosocial support and life skills education through holiday camps and kids clubs in urban Bulawayo. These youth had an excellent understanding of day-to-day issues faced by orphans at community level. Furthermore, they had excellent peer networks through which to gather information and gain access to CHHs.
The researcher conducted three training sessions, with these research assistants, each lasting three days, and covered the following topics:
What is social science research?
Research ethics, especially when working with children
Varieties of research (qualitative and quantitative)
Data collection methods, quality and supervision
Interviewing techniques and practice
Gaining access and getting informed consent
Data entry, analysis and interpretation – basics of SPSS program use
Reporting and dissemination
This process was highly valued by the youth and appreciated as a capacity building process for their future careers. The team was greatly motivated throughout the research. Although there was need for ongoing and close supervision to ensure quality data, the research assistants were a valuable help. Without them it would not have been possible to collect, over a twelve-month period, over 37,000 daily journal questionnaires with over two million single answers provided by the participating CHHs.
The process of youth involvement has confirmed the researcher’s experience that youth participation and empowerment is extremely valuable at all levels of development planning and programming, including the research process. This in itself was an informative finding obtained from this research.
Conceptual framework
Exploratory research was conducted in the geographical area in October and November 2000. This was aimed at refining study objectives and identifying relevant domains and manifestations of CHHs and community care networks. Chapter 2 demonstrated that issues related to households affected by HIV/AIDS, and CHHs in particular, are complex. Before research methods and tools were finalized, FGDs were used in developing a conceptual framework for this research.
Table of contents
Summary
Opsomming (Afrikaans Summary)
Tables
Figures
Maps
Pictures
Acknowledgements
Glossary
Abbreviations
1 Background to AIDS and children in Southern Africa
1.1 Introduction
1.2 Background to the research
1.3 Problem definition and research justification
1.4 Objectives of research
1.5 Scope of research and limitations
1.6 Summary and conclusion
2 Orphans and child-headed households in Africa (Literature review)
2.1 Introduction
2.2 Orphans in Africa
2.3 The situation of children orphaned or affected by AIDS
2.4 Care responses for orphans and children affected by AIDS
2.5 Child- headed households
2.6 Orphans and social change
2.7 Summary and conclusions
3 Research design and methods
3.1 Introduction
3.2 Ethical issues in research with children
3.3 Selection and training of research assistants
3.4 Conceptual framework
3.5 Research methods
3.6 Summary
4 Situation analysis – urban Bulawayo
4.1 Introduction
4.2 Overview of the socio-economic situation
4.3 The situation of children in urban Bulawayo
4.4 Child support mechanisms
4.5 Summary and conclusions
5 Case studies of child-headed households
5.1 Introduction
5.2 Methods of documentation
5.3 Case studies
5.4 Conclusion
6 Households, quality of life, emotional coping and resilience
6.1 Introduction
6.2 Emotional impact of HIV/AIDS on CHHs
6.3 Resilient children
6.4 Quality of life and emotional well-being of CHHs
6.5 Psychosocial issues of CHH
6.6 Summary and conclusions
7 Child-headed households & household coping
7.1 Introduction
7.2 Household coping strategies
7.3 Nutrition, health, education and protection in CHH
7.4 Economic coping at household level
7.5 Summary and conclusion
8 Child-headed households, community child care capacity, programmatic responses and policy /
child rights implications
8.1 Introduction
8.2 Community perceptions of CHH circumstances
8.3 CHH and safety nets
8.4 Rights, laws, policies and CHHs in Zimbabwe
8.5 Summary and conclusions
9 Discussion, conclusions and recommendations
9.1 Introduction
9.2 Conceptual framework
9.3 Limitations of the study
9.4 Summary of results
9.5 Recommendations
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AN EXPLORATORY STUDY OF QUALITY OF LIFE AND COPING STRATEGIES OF ORPHANS LIVING IN CHILDHEADED HOUSEHOLDS IN THE HIGH HIV/AIDS PREVALENT CITY OF BULAWAYO, ZIMBABWE
