The Kagera Health and Development Survey was conducted for the research project on “The Economic Impact of Fatal Adult Illness due to AIDS and Other Causes”, Mead Over (Principal Investigator, World Bank), Martha Ainsworth (Co-investigator, World Bank), and Godlike Koda, George Lwihula, Phare Mujinja, and Innocent Semali (Co-investigators, University of Dar es Salaam). The primary objective of the Kagera Health and Development Survey (KHDS) was to estimate the economic impact of the death of prime-age adults on surviving household members. This impact was primarily measured as the difference in well-being between households with and without the death of a prime-age adult (15-50), over time. An additional hypothesis was that households in communities with high mortality rates might be less successful in coping with a prime-age adult death. Thus, the research design called for collecting extensive socioeconomic information from households with and without adult deaths in communities with high and low adult mortality rates. Data collected by the KHDS can be used to estimate the "direct costs” of illness and mortality in terms of out-of-pocket expenditures, the "indirect costs" in terms of foregone earnings of the patient, and the "coping costs” in terms of changes in the well-being of other household members and in the allocation on of time and resources within the household as these events unfold. The KHDS was an economic survey. It did not attempt to measure knowledge, attitudes, behaviors or practices related to HIV infection or AIDS in households or communities. It also did not collect blood samples or attempt to measure HIV seroprevalence; this would have substantially affected the costs and complexity of the research and possibly the willingness of households to participate. Information on the cause of death in the KHDS household survey is based on the reports of surviving household members; the researchers maintained that household coping will respond to the perceived cause of death, irrespective of whether the deceased actually died of AIDS. Lastly, the KHDS did not attempt to measure the psycho-social impact of HIV infection or AIDS deaths. OVERVIEW OF THE RESEARCH DESIGN The research design called for a longitudinal survey of a sample of households, some of which would experience an adult death and some of which would not, some of them drawn from communities with high adult mortality rates, and some drawn from low-mortality communities. The sampling frame for the survey was based on the 1988 Tanzania Census, which also provided information on adult death rates by ward within Kagera region. While it was possible to determine which communities had relatively high and low adult death rates from the census data, two additional problems arose that led to the decision for a stratified sample of households based on multiple criteria: First, despite the high rates of HIV infection in Kagera and the large number of deaths over time due to AIDS, the death of a prime-age adult is still a relatively rare event over a short time period. This meant that a very large sample would have had to be selected in order to ensure that the survey could interview enough families suffering our about to suffer the death of a prime-age adult. Second, HIV prevalence and adult mortality rates in Kagera were geographically concentrated and thus strongly correlated with different climates and cropping patterns. The highest rural HIV infection rates were in the northeast (10% in Bukoba Rural and Muleba districts and 24% in the town of Bukoba), where tree crops (bananas, coffee) were predominant, while the lowest rates were in the south and west (0.4% in Ngara and Biharamulo districts), where perennial crops and livestock are more common (Killewo and others 1990). A survey design stratified only on mortality rates might confound the effects of high mortality with different agricultural, soil, and rainfall patterns. Thus, the sample of households was selected from a stratified random sample of communities from the 1988 census (stratified on agroclimatic zone and adult mortality rate). Within communities, the household sample was stratified according to the anticipated risk of each household of suffering a prime-age adult death. Households were classified as “high-risk” or “low-risk”, based on information obtained from a house-to-house enumeration of all selected communities. One additional concern was that the high mortality of households might lead to attrition from the sample that is systematically related to household coping. For example, if out-migration is an important coping behavior, then the most severely affected households might leave the sample and the analysis of the remaining households would understate the economic impact of adult deaths. For this reason, at the conclusion of the fieldwork, interviewers attempted to locate and interview all of the individuals who were members of households that dropped out of the longitudinal survey between the first and last interviews, and who were still resident in the region. Individuals were given a specially designed “follow-up questionnaire” that included much of the individual information collected in the household questionnaire, plus information on the reason for leaving the sample and the characteristics of the household were they were now residing. The final longitudinal household survey followed 816 households at 6-7 month intervals, over a 24-month period from 1991-94. The 816 households were selected from 51 “clusters” of 16 households each located in 49 villages or urban areas representing four economic zones of all districts in Kagera region and, within each zone, representing areas with both high and low adult mortality. Because household coping behavior is conditioned on local prices, services, and available programs, the KHDS also collected data from the communities from which households were drawn, local markets, the nearest source of modern medical care, and all of the primary schools in the community. This information was collected longitudinally, with the exception of a questionnaire for traditional healers, which was administered only once. While households were drawn from a stratified random sample of households, the health facilities, schools, markets and healers interviewed represent those closest to each community and thus are not random samples that are statistically representative of Kagera facilities. The panel survey was conducted in a total of five waves. Wave 1 September 1991 May 1992 Wave 2 April 1992 November 1992 Wave 3 November 1992 May 1993 Wave 4 June 1993 January 1994 Wave 5 2004
