University of Stellenbosch HIV/AIDS ALIENATION: BETWEEN PREJUDICE AND ACCEPTANCE Chapter 7 The Way Forward: Conclusions and Evaluation of the Project JANET L. BROWN Dissertation presented for the Degree of Doctor of Theology At the University of Stellenbosch Promoter: Professor H. JURGENS HENDRIKS April 2004 Chapter 7 The Way Forward: Conclusions and Evaluation of Project 229 7 INTRODUCTION 229 7.1 CONCLUSIONS FROM SINGLE-SYSTEM DESIGNED RANDOMISED CROSS-SECTIONAL QUANTITATIVE SURVEY 230 7.1.1 Results of the initial survey revealed: 231 7.1.2 Results of the ONE YEAR LATER survey revealed: 241 7.2 INTER-GROUP RELATIONSHIPS AND DYNAMICS 249 7.3 CHIMBALAME GROUP EVALUATIONS 251 7.3.1 Poverty - a major impediment 252 7.3.2 One-year evaluation Chimbalame HBC: 255 7.3.3 Chimbalame intervention research. 260 7.4 KANING'A CCAP GROUP EVALUATIONS 262 7.4.1 Challenges faced when mixing the two training groups 263 7.4.2 Kaning'a one year evaluation 263 7.5 IDENTIFIED PROBLEMS AND CHALLENGES 265 7.5.1 Identified Problem: Lack of peer-group support reduces effectiveness 265 7.5.2 Kaning'a CCAP Intervention Research. 266 7.6 MOVING FORWARD 270 7.6.1 Moving Forward: Chimbalame 270 7.7 FINAL CONCLUSIONS AND SUMMARY 276 Chapter 7 The Way Forward: Conclusions and Evaluation of Project 7 INTRODUCTION All of the information, which has been presented to this point has been designed to lay the foundation needed for the development of the project leading up to this final chapter. The entire project now comes into focus making possible the development of projections looking at the way forward. The initial stating of the problem in chapter one lead to the subsequent questions demanded by it: 1. Can the negative attitudes, prejudices and behaviours which are held and demonstrated by many in the church towards those suffering with HIV/AIDS, be changed by using deliberate attempts to alter their perspective of this pandemic by providing accurate information, in juxtaposition with the demonstration of Christ's love and compassion to this community? 2. In conjunction to this first question comes a second: Can the compassionate outreach of the church, as it follows Christ's mandate to love (through HBC), change the perspective of those in the HIV/AIDS community so that instead of viewing the church (as a whole) as cold and unloving, their perception will change with the demonstration of such love and compassion by it's membership that they begin to see the church as a source of hope and love? This study has explored and examined how the relationship between the local church and the HIV/AIDS community has been altered as it was provided with the opportunity to learn about each other in safe, non-threatening ways using the vehicle of HBC as the point of entry. The subject of this research has been to specifically examine a certain segment of the HIV/AIDS pandemic, specifically the response of the local church as they visualize the problem and attempt to determine the role that the body of Christ (1.4.10.2) should play in this world crisis. In a systematic and disciplined way, the historical response of the church has been reviewed with reflection regarding its reaction to the pandemic of HIV/AIDS, first in a global, and then in a more focused way. This historic groundwork being laid, the next logical step was to explore the unique cultural paradigms in the African context that must be recognized and incorporated into our understanding in order to more fully realize the impact HIV/AIDS has had on the African continent. With this much of the foundation laid, it was then important to look at the Malawian, and even more specifically at the Chewa, along with other local cultural practices that contribute to the spread and continuation of the disease in the local milieu of the focused study area. In view of these factors, the theological implications which gave rise to this pandemic were then investigated in chapter five, as the hermeneutic of Christ's mandate to 'love one another' was explored with the unambiguous ramifications that this command demands in the action and ecclesiastical response by the faith community. The issues resulting from an improper hermeneutic of God's command to love -- alienation, estrangement and prejudice when explored in light of the development of a praxis process from the standpoint of Practical Theology. Chapter six offered a detailed narrative regarding the specific procedures and methodology used to draw together the data necessary for this final phase of elucidation that will now be disclosed as the information is assessed, evaluated and interpreted. 7.1 CONCLUSIONS FROM SINGLE-SYSTEM DESIGNED RANDOMISED CROSS-SECTIONAL QUANTITATIVE SURVEY One of the unexpected findings that came to light from this survey was the fact that the initial information used in the most preliminary planning stages was in error. Instead of the community being completely replete of home care (as had been reported by the local authorities), there was indeed a HBC program already established in the community which had on a limited basis, obviously made some inroads towards the objectives of this study within the particular scope of their work. This program was developed and run by the local Roman Catholic diocese and was primarily, although not entirely, limited in scope to the community belonging to the Roman Catholic Church. The survey also revealed that 78% of the study population from the target villages claimed to be Christian and of those, almost one third (31%) were Roman Catholic. Therefore, since they were obviously aware of their own program, a larger than anticipated number of respondents responded in a positive way when asked if they believed the Church was having a positive effect on the attitudes of the people. Although the Roman Catholic Church was not to be excluded in the HBC program to be undertaken, neither were they considered integral participants, as this work was to be primarily Protestant in nature. Indeed, as seen from the initial volunteer training, there were ten denominations represented in the class. Three of the volunteers were Roman Catholic and it should be noted that they were the only people in the class that claimed to have any previous training, as they were part of the Roman Catholic volunteer HBC force. When this was discovered, they were welcomed into the class but it was requested that they make a commitment and determination to work with only one group or the other. They unanimously chose to work with Partners in Hope and relinquish their roles with the Roman Catholics. As time progressed, it was found that these volunteers did indeed return to their previous organization. This was primarily due to the fact that their motivation for working for Partners in Hope was suspect in that they were looking to see if they would be recipients of more goods and services in the new group. Once Partners in Hope was established as a solely volunteer group, they no longer felt the need of participation. The focus of Partners in Hope was also substantially different in its scope than the Roman Catholic program1, which probably also served to contribute to their returning to their original work. 7.1.1 Results of the initial survey revealed: (See Appendix G for actual figures) Question #1: How do you think people in the Church feel about those suffering from HIV/AIDS? 1 2 3 4 5 Christians don't get HIV/AIDS. Those that do are receiving the punishment they deserve for the sins they have committed. There aren't any people in the church with HIV/AIDS. It isn't a problem that they have to deal with. They want to reach out to them with the love of Christ and do all they can to relieve their suffering. 19 % 11 % 8 % 18 % 43 % Question #2: How do you think people in the AIDS community feel about the Church? 1 2 3 4 5 People with HIV/AIDS are not welcome in the Church because they are sinners. People with HIV/AIDS can come to the church, but people keep their distances from them. People with HIV/AIDS feel love and acceptance when they are in the Church or around Christian people. 7 % 4 % 25 % 11 % 53 % Question #3: Do you think attitudes between the church and the HIV/AIDS community has changed in the last few years? 1 2 3 4 5 There is no difference in attitudes in these groups. People are more open and aware, but continue to act in the same way The church is seen as more loving and accepting of the HIV/AIDS community now. 29 % 8 % 26 % 8 % 52 % Question #4: Has anyone in the family suffered from HIV/AIDS? 1 2 3 Yes No Uncertain 42 % 36 % 22 % Question #5: Level of Education 1 2 3 4 5 Primary Secondary College Trade Other 53 % 24 % 4 % (questionable) 13 % 6 % Question #6: Religious Beliefs 1 2 3 4 5 Christian* Muslim African Traditional None Other 77 % 15 % 2 % 5% 0 % * For a breakdown of the various Christian denominations, please refer to Appendix G. Question #7: Age 1 2 3 4 5 15-20 21-30 31-40 41-50 51+ 23 % 28 % 26 % 15 % 8 % Using the raw data from this quantitative paradigm survey, the following information was extrapolated: The data was reduced for analysis, by elementary convention in statistical counting by means of univariate analysis (De Vos1998:204) methodology, with all the data for each one of the variables gathered for utilization. Since each variable was itemized individually, we will proceed first by examining the simple frequency distribution of each question. Question #1: How do you think people in the Church feel about those suffering from HIV/AIDS? The bar graph below serves as a pictorial device to illustrate the data for question number one. While it is encouraging that a large number (61%) of the respondents answered affirmatively (choosing numbers 4-5 for their response) that they felt the church was responding with a loving message towards those suffering HIV/AIDS, the collective response of a full 38% indicated a neutral or less response (choosing numbers 1-3 for their answer) with 20% of respondents answering that they felt there the church looked negatively (choosing numbers 1-2 for their answer) upon those suffering with HIV/AIDS. The results from this initial survey question significantly contradicted the beliefs held by the clergy in the community. Clergy from at least four different denominations were interviewed extensively and each one confirmed the facts as they saw them. From their perspective, the congregations held primarily (80-95%) negative views towards those suffering from HIV/AIDS up until the recent past. At the beginning of the test period, the pastors were estimating that between 60-75% (average figure of 68% used for illustrative graphic purposes) of those within their own congregations continued to have negative attitudes but did feel optimistic that they were becoming more open to change. It is an interesting phenomenon to note that there is almost an exact inverse relationship between the perceived views of the clergy toward the church, and those of the surrounding community toward the church. As a reminder, the questions were deliberately worded so that the individual responding would not feel 'on the spot' by being asked to give their own personal opinion. In Malawian culture, a person will try to give the answer they perceive the questioner would be most pleased with, even if it means they are not telling the truth by doing so. Therefore, the questions were worded so that the responder would be giving his or her opinion of what other people in the community think about the issues at hand. It is hoped that by doing this, a more honest result would be obtained about the actual views of the community. Following this first question about the perceived attitudes of the church towards the AIDS community, a natural follow-up question was designed to determine the perception of the community as it attempts to interpret the feelings of the HIV/AIDS community towards the Church. Question #2: How do you think people in the AIDS community feel about the Church? Overall, the response was quite positive, using a relative frequency distribution technique (De Vos 1998:208), the majority (64%) of the respondents indicating a belief that those in the AIDS community feel optimistic about receiving a positive response if they were to go to the church. It is the opinion of this researcher, based upon personal interviews with both clergy and laypersons in the community, that much of this optimistic opinion is reflecting a more hopeful thought than realistic outlooks found in the community. Question #3: Do you think attitudes between the church and the HIV/AIDS community has changed in the last few years? This question was designed to help determine whether the people in the community feel there is any change in attitudes in these two groups over the past few years. It is beyond the realm of this study to hypothesize as to why changes are occurring; in this univariate analysis the only perception being assessed is whether or not change is indeed occurring. Question #4: Has anyone in the family suffered from HIV/AIDS? This simple, yet direct question was presented not only to evaluate the obvious information received from the answer, but also to be used as an indicator to ascertain the level of awareness and acceptance the respondents demonstrated about their own willingness to disclose. Researchers were instructed to use great sensitivity and discretion when asking this question, and not to push for any answers the participant was not willing to share with the questioner. With this consideration, it is apparent that almost one quarter of the participants (22%) responded with uncertainty. Although this may be lack of knowledge in some cases, most people are at least moderately aware of the signs and symptoms of advanced AIDS. Therefore, it can be hypothesized that a significant portion of the existing uncertainty may be more accurately labelled denial. Question #5: Level of Education This question was for range and balance as only those who were fifteen years old and older were questioned. To qualify for a category, completion was not necessary. For example, if someone had finished at least 'some' of secondary school, they were counted in this category. The mean category, that of 'college' this researcher finds suspect, as the vast majority of village area where the survey has taken place is made up of unskilled, and many literate people who have not had any opportunity to receive any college education. No attempt was made to differentiate what types of advanced programs may have been taken or gender percentages. This aspect of analysis was added for perspective of the respondent survey group. Question #6: Religious Beliefs The information gleaned for this aspect of the study proved interesting since twenty-three percent of the respondents were admittedly non-Christian, yet they were commenting on their impression of the attitudes of the church and those responding to it. Although the various Christian denominations were sorted and categorized; no attempt was made to filter out the various groups and examine the data to make determinations as to what trends might be associated with each denominational persuasion as that is not within the realm of this study. The overarching look at the religious picture of the community's religious preference demographic indicates that they are roughly within the overall national statistics for Malawi (UNICEF 2002). The denominational codes are as follows: CCAP - Church of Central Africa Presbyterian; RC - Roman Catholic; AoG - Assemblies of God; EP - End Times Pentecostal; A - Anglican; SDA - Seventh Day Adventist; CoC - Church of Christ; Misc - AA - African Abraham; NA - New African; JW - Jehovah's Witnesses Question #7: Age The ages of the respondents reflect the national trend of decreasing age (UNICEF 2002) with the average life expectancy from birth being 40 years2. With over half the population being under fifteen years of age, less than half the population was even available to participate in this survey, as the field workers were instructed to only survey those fifteen years old and older, because this is the age when the curve rises steeply regarding new cases of HIV infection. 7.1.2 Results of the ONE YEAR LATER survey revealed: One year following the initial survey, and subsequent to the HBC workers continuously visiting in the villages, another Single-system designed randomised cross-sectional quantitative survey was performed. In an effort to control variables, only one surveyor was used so all respondents were questioned in the same manner. The survey was identical in nature and method to the first, with the exception of only using one surveyor as indicated, and two additional questions were included with the survey. * Question #8: Are you familiar with Partners in Hope HBC, which was started one year ago? * Question #9: Do you think the HBC has helped to change attitudes between the Church and the HIV/AIDS community? These questions were added in an effort to ascertain whether or not the community as a whole was becoming more aware of the HBC program and if they had any perception of its impact among the people of the community. The same guiding principles used in the first survey were utilized for the methodology of this follow-up survey. From the results of the first study, a comparison was then made between the results of this second survey one-year later. These results and the comparison study from this survey are as follows: Question #1: How do you think people in the Church feel about those suffering from HIV/AIDS? The one-year follow-up survey reveals a significant decrease in negative attitudes of a 34% cumulative drop in the first three categories. An interesting component to this question is the change in attitude perception in the positive categories. The overtly positive response on the far right of the graph diminished overtly, while the second category demonstrates a sharp rise in positive attitudes. Considering the possibility of field worker interpretive error, and averaging these two figures to a sum of 48 makes a less appreciable, but possibly more reliable indicator of the result, which continues to be encouraging, even with this adjustment. Question #2: How do you think people in the AIDS community feel about the Church? The appreciable differences noted on the negative side of this question are relatively minimal, with only a decrease of 6% at the lowest indicator, and no change at the next level. The median indicator, which is the more neutral of the questions, showed a 24% drop in negativity, along with an 18% decrease at the most positive indicator. What is surprising on this positive side of the graph is the midland indicator that has an inverse report of 39% increase in the positive response from the previous year. Question #3: Do you think attitudes between the church and the HIV/AIDS community have changed in the last few years? This question holds considerable optimistic promise as it indicates the perception of the community that change is occurring for the better. The people surveyed have indicated a positive influx in how they perceive the church and its role in the community regarding its effect on the HIV/AIDS crisis. Only one year ago, almost one third of those surveyed felt that there was no change to be seen over the previous few years. This number decreased by 25 percentage points in one year's time. Question #4: Has anyone in the family suffered from HIV/AIDS? A 14% increase in the affirmative response indicates more awareness of the affect this disease is having upon those in the immediate families of those surveyed. An interesting indicator can be observed in the 'uncertain' category, which might be attributed to the way the question was handled by the field worker, or it could be an indication that people are living with less denial and becoming more aware of the actual circumstances surrounding the tragedy all around them. Most likely, this response is a combination of both of these factors. Question #5: Level of Education Knowing the subject village personally, the one-year follow-up survey has what this researcher considers to be a more realistic response. It is doubtful that any in the village have an educational level beyond that of secondary school. There is an exceptionally high (76%) number who have attended, but not necessarily finished primary school. This is collaborated by the very few people in the village are fluent and competent in English; these two facts correspond to the fact that although English is taught in Primary School, but in order to function in Secondary School, one must be proficient in English because all classes are taught in that language and not in the local vernacular. Question #6: Religious Beliefs * The denominational codes are as follows: CCAP - Church of Central Africa Presbyterian; RC - Roman Catholic; AoG - Assemblies of God; EP - End Times Pentecostal; A - Anglican; SDA - Seventh Day Adventist; CoC - Church of Christ; Misc - AA - African Abraham; NA - New African; JW - Jehovah's Witnesses Question #7: Age The age of the respondents in the initial survey was surprising considering the national age related figures. This one-year follow-up study shows a significant increase in the 21-30 age group that this researcher believes more closely corresponds to the general population of the community assessed. Question #8: Are you familiar with Partners in Hope HBC, which was started one year ago? This question was asked simply to get a feel for the community's awareness of the HBC program. Since it is primarily limited to the local milieu surrounding the participating churches, it would be reasonable that it was not too well known throughout the general population of these villages. Question #9: Do you think the HBC has helped to change attitudes between the Church and the HIV/AIDS community? This question was not designed to require interpretation on the part of the respondent, only a general indication of his or her perception about the changing of attitudes, and whether or not the HBC program has had any impact in this area. Again, it must be noted that although measures were taken to avoid answers given with the intention of attempting to please the interviewer, it must be realized that with a question like this one, there is a significant possibility of this type of risk as the participant is fully aware that this survey is being performed by Partners in Hope HBC. The respondent may therefore, because of his or her cultural background be tempted to provide at least a neutral, if not a positive response. Even with this consideration the findings are optimistic as everyone reported a positive change with the larger majority (58%) affirming a more significant change, and the remaining 42% feeling that at least some change for the positive has taken place. 7.2 INTER-GROUP RELATIONSHIPS AND DYNAMICS Because of separate training sessions of the Chimbalame group and the Kaning'a group, along with a significant variance in demographics between the two groups (see chart below), only minimal attempts were made to solidify these groups. They did occasionally come together for the monthly seminars, but tended to function very independent of each other overall. The third church originally identified never did participate in the program. Since it was deemed important for the church to take the lead, it was felt by the HBCPC that it would be counterproductive to try and 'woo and encourage' them to participate, feeling that this would lay a foundation for their participation as a response to a perceived need on the part of Partners in Hope. This would give the impression that they were participating in our program, instead of us taking a minor role in helping them to develop their program. ATTRIBUTE COMPARISON BETWEEN TWO STUDY SUBJECT GROUPS Chimbalame Kaning'a CCAP 1 10 churches representing 10 denominations One church from one denomination 2 From an overpopulated area with several villages sharing boundaries Larger area 3 People very poor Most people financially secure 4 People mostly uneducated, or limited Most people are literate and many educated professional people 5 Large unemployment or pieceworkers Most have secure jobs 6 Few people have bicycles, most travel by foot Many have their own cars or means of transportation 7 People live in mud brick homes, often with grass roofs People have homes with plumbing and electricity 8 Clothes at subsistence level, usually well worn and chosen for function Wearing Malawian designer clothes 9 Very dependent upon Partners in Hope Very independent of Partners in Hope 10 Chichewa speakers, with limited English Chichewa 1st language, but proficient if not fluent in English 11 Placed great importance in hierarchy and status in the group makeup Worked within existing structure and hierarchy 12 Liked to work in groups Liked to work in groups, but often worked independently due to scheduling difficulties 13 Liked identifying group clothing Liked identifying group clothing, but this eventually worked against them as identifying them as 'AIDS' group 14 Individual churches had some pre-existing home visitation programs, but with no connection to this committee Pre-existing home visitation program in place, in connection with other benevolent ministries (orphans, elderly, care, etc.) 15 Initial class size: 52 Initial class size: 37 16 Number of volunteers visiting one-year later: 45 Number of volunteers visiting one-year later: 0 17 No one in group with previous HBC experience Group primarily made up of Kaning'a's benevolent committee, including 2 nurses 18 Many are displaced persons (individuals, or individual family units) from more remote villages who have come to the city for work Many have lived in Lilongwe for a length of time and have an established familial support system in place Comparisons between the two groups initial composition are listed in the chart above. These differences were not appreciable during the training process or in their grasp of the information given. The immediate response from both groups was similar in that both groups gladly received the training sessions and expressed appreciation of materials and information gained from the experience. Both groups began with zeal and enthusiasm, and were encouraged to take 'ownership' of their ministry with Partners in Hope available for further consultation and assistance. Following the training and initial beginning of the HBC program, notable differences began to be observed. From the beginning, the Kaning'a group exhibited a sense of ownership of their program (item 9 from chart above). In their church organization, (CCAP is infamous for their strong bureaucratic infrastructure) a provision was already in place for benevolent ministry (item 14). 7.3 CHIMBALAME GROUP EVALUATIONS Without the existing framework already in place, the Chimbalame group was forced to develop its own organizational structure. The initial plan of the HBC was to develop a functional augmentation of the visitation program already existing in the church. This goal was modified however in order to comply with the overriding need of allowing the group to control their own development based upon their perceived needs and vision. The initial goals and plans of this research were intentionally allowed to fade from the focus in a deliberate attempt at allowing the Chimbalame group to take 'ownership' of the project. Seeing group ownership as an essential function, which would serve as a foundation of the entire program justified the change of goals at this point in the evolution of the program. 7.3.1 Poverty - a major impediment As the Chimbalame group began to identify their organizational structure, a strong central committee developed which later developed into an entity of its own (see below for further explanation of this feature). Several factors must be considered as to why this phenomenon took place. One of the most significant features that must be considered is the abject poverty that is prevalent in the Chimbalame group. As already pointed out, the Kaning'a group was made up mostly of individuals who had a more secure level of living, with relative job stability and intact familial family support systems in place. They would probably then be placed in the third to fourth level of Maslow's hierarchy of need (Barlow 1992:355). Because of their level of affluence, they have progressed beyond the needs of the physiological and safety needs, and are therefore able to exercise the luxury of volunteerism. Through the development of this study, this researcher has become acutely aware of the devastating effects of poverty. Outside of the manifestation of an overflowing divine love, coming from within and exhibiting itself in such munificent action, is simply impossible for those at the lowest levels of the hierarchy to give of themselves in what might normally be thought of in the idea of volunteerism (as perceived by those on the higher levels of Maslow's hierarchy). Their basic physical needs were simply too great to be able to look beyond their own seemingly hopeless situation to care for the needs of others. To ask someone to give benevolently of their own time and resources, when they themselves have not eaten was found to be simply beyond their capability. Bate identifies this phenomenon of acknowledging poverty as a problem but then attempts to minister without ever fully addressing it. In his research, he points out that although poverty was identified in the initial planning stages, it was overlooked as an actual component of the ministry until circumstances demanded a change (Bate 2003:201), A few projects initially envisaged a poverty relief component as an essential aspect of their work, but the majority preferred to focus their efforts on providing care which directly responded to the HIV/AIDS crisis. But most, especially those working in rural areas, eventually found that there work was impossible without a poverty relief component. One of the effects of this phenomenon of poverty was how the Chimbalame group began to intensify their identity of themselves as a group. Since most were either unemployed or if employed, they were working in temporary unstable job situations, they did not derive their sense of identity (item 5 from Attribute Comparison chart above) from their work situation. Another significant factor, which is akin to the poverty challenge, has to do with the fact that they did not have the normal support systems in place that most Malawians have come to see as their source of identity (3.8; 4.14), also item 18 from Attribute Comparison chart. Because of these two reasons, the Chimbalame group began to perceive its identity from the group itself. The committee took on a significant role in their lives and the hierarchy of the committee and the power of the ruling positions became of paramount importance to them. Professing to have the interests of the patients as their priority, they continued seeing the patients or often merely claiming to see the patients; with the ulterior motivation underlying of an eventual reward for their efforts, either financial or substance. Since for many of the volunteers, if not for most, this was their primary motivation for service; their frustration at what they perceived a lack of items due to them becomes more understandable. Many of the Chimbalame group also saw the training they received as a possible entry into employment by ABCCC and were therefore wanting to maintain, if not intensify their relationship with the clinic and the HBC department. The Kaning'a group, on the other hand did not have such aspirations due to their more secure employment situations. Another important factor for consideration was the fact that those in the Kaning'a group were significantly more comfortable with their English comprehension and therefore they were able to communicate more effectively with the HBC trainers. This allowed them to feel more independence from their trainers and confidence in their ability to move forward autonomously. This phenomenon of internal intensification at the expense of external outreach of the Chimbalame group as opposed to the outward focus of the Kaning'a group bears some resemblance to the phenomenon described by Newbigin as he discusses McGavran's concept regarding his 'mission station' theory. McGavran studied the reasons why some mission churches multiplied rapidly while others in similar situations stagnated. What he found was: As converts were detached from their natural communities to which they belonged, and attached themselves to the foreign mission and its institutions, which required them to conform to ethical and cultural standards that belonged to the Christianity of the foreign missionaries a two-fold outcome was observed. As they were removed from their own environments [cultural surroundings], they were no longer in a position to influence non-Christian relatives and neighbours; and secondly, the mission station churches soon became exhausted in their efforts to bring the converts, or more often their children, into conformity with the standards supposed by the missionaries to be required by the gospel. Both factors have the effect of stopping the growth of the church (Newbigin 1995:122). Similarities to the findings in this HBC study begin to surface when one examines the eventual outcomes of these two groups. Chimbalame, which maintained a strong identity with the ABCCC, severed their identity with their individual churches, and lost all interest in looking outward, thus losing their focus and vision of serving the Kingdom. This led to their ultimate demise as they became so self-serving (as did McGavran's stagnating church) that they could no longer function. The Kaning'a group, in comparison to McGavran's growing churches, retained its focus and mission even though it suffered from struggles in other areas. 7.3.2 One-year evaluation Chimbalame HBC: The first trainees began their initial classes in early February 2002. Although they began with one heart and one focus, once the HBC project had been in place and actively working with patients in the local area several degenerative changes became increasingly apparent. Although the volunteers continued to claim commitment to the program, a number of disruptive undercurrents began to surface based upon the rational described above. After investigating the situation more thoroughly, several areas of discontent became apparent from amongst the volunteers. Up until this point, these areas were not brought to the attention of this researcher or others assisting with the program. The main catalyst for the discovery of the problems was the hiring of a full-time home-based care nurse to assist the volunteers with the medical components relating to their patients care. During this initial year of practice and development, the HBC volunteers were functioning primarily in the role of chaplains, giving spiritual support and comfort to those they were seeking to help. In accordance with the initial goals of the project, the medical training received by the volunteers was intentionally very rudimentary. They were therefore not equipped with the necessary skills needed in order to allow them to actually assist with any medical decisions for the patients in any real way. As the one-year anniversary of the HBC program approached, evaluations were done concerning the viability of the program. From this data, it seemed feasible to seriously consider the option of outside funding to enable the hiring of a registered home care nurse to aid in the development of the medical component of the program. Because of the nature of the HBC patients, who were primarily suffering from AIDS or other disease processes that caused them to be confined to their homes; many of the volunteers expressed feelings of frustration and a sense of helplessness when visiting patients with obvious physical needs, since they were unable to address their actual bodily needs. By the end of the first year, funds became available through Partners in Hope to hire a full time nurse. This nurse was to act in the role of medical liaison to Dr. Perry Jansen at the ABCCC. An experienced Malawian HBC nurse was hired to work primarily in the village areas, supervising the home care volunteers, and overseeing the medical needs of the patients involved in the program. The volunteers continued to meet regularly with HBCPC for feedback and follow-up. The HBCPC took deliberate pains to work within the guidelines established with the goal of keeping the ownership of the program within the hands of the volunteers themselves. Therefore, other than monthly updates, and encouragement of the volunteers, additional obvious oversight was kept to a bare minimum. Time was given for the volunteers to assess their own needs and then bring these needs to the attention of the HBCPC instead of direct intervention begun when a need began to surface and reach the attention of the trainers. The program trainers made regular visits to the field, but kept these visits limited in scope due to the disrupting effect noted by this researcher when these visits were made. It became quite apparent when this researcher made visits with the volunteers that the patients, although quite gracious and most likely genuinely pleased by the visit, felt quite unnerved by the fact that there was an azungu (white woman) in their house. What inevitably happened would be a degeneration of the actual purpose of the visit to provide loving concern and comfort to the patient; and instead the visit turned into a time when the patient would feel compelled to express continued gratitude to this researcher for the kind assistance of the volunteer. Because of this tendency noted in the patients, and the cultural and language barriers between the researcher and the patients, most contact and evaluation of patient status was done through the opinions and judgment of the volunteers. These factors caused a considerable amount of difficulty in getting an accurate picture of the actual home and patient situation due to the cultural tendencies of Malawians to please along with their willingness to offset the actual truth with what they perceive would be the information desired by the researcher. It was not until the Chichewa speaking, Malawian-born, full-time HBC nurse was hired and actually began making visits to the patients that some disturbing underlying problems were discovered in the HBC program. The following difficulties were noted: 1. As the volunteers were becoming increasingly dissatisfied with the lack of 'incentives' being received, they lost their altruistic heart. This caused their focus to change from their original goal of visiting patients for the purpose representing their church by demonstrating the love of Christ as they lovingly cared for the sick and suffering in His Name. Instead, their focus had degenerated into an opportunistic consideration of what advantages they could obtain by participating in the 'program'. 2. As the homecare nurse made visits to the patients, she began to become aware of discrepancies between the number of visits made by the volunteers and the number of visits reported and confirmed by the patients. Although the volunteers continued to express great satisfaction to this researcher and the HBCPC, and continued to attend meetings, and training seminars, the actual number of visits being made to patients had diminished significantly. In addition to the discrepancies noted in visiting schedules, when patients were asked about items that were given to the volunteers for the patients, patients reported that they did not receive any such items. Measures were then put in place to call for more careful accountability on the behalf of the volunteers, which were met with increased suspicion and resentment. 3. The individual churches represented by the volunteers participating were no longer the sending agency for the volunteers. Instead, the 'committee' had taken on a larger role, usurping the churches role of ministering to the sick and suffering in the name of Christ. The committee had developed into an entity in itself. Members of the committee were often not making visits at all or only occasionally. The growing strength and importance of the committee had shifted to be perceived as their worthwhile cause. o Rather than seek out lonely isolated individuals from their churches or surrounding community who were suffering and in need of comfort and spiritual guidance, they readily joined in assisting those patients who had already been identified as needy by other agencies. Many of the patients under the care of this program were also receiving services and care by the Catholic home care unit which was working in the area (which was in direct conflict with the agreement made with the Catholic Sister in charge of the program when the original plans were being put into motion). This did not pose too significant of a health risk to the patients when the HBC was performing only chaplain type visits, as it would be doubtful that anyone could receive too much comfort and loving care from others. The danger of this practice became apparent when the medical component was added and patients were then given medications, which had the potential to contraindicate or exacerbate the complications already established by the regime prescribed by other medical health professionals who were unaware of the double medical attention they were receiving.3 Another difficulty associated with this problem surfaced when the other agency involved was giving out more food items than Partners in Hope. This resulted in the patients and volunteers perceiving that they were not receiving their fair 'allotment', causing them to become disgruntled and accusatory toward the volunteers (who then began to share in their suspicions) believing that Partners in Hope was appropriating what was rightfully theirs. o This practice can be observed in the documentation of a 'volunteer' program describing 'volunteers who work for little or no recompense' (Bate 2003:2001), which demonstrates the underlying perception that 'volunteers' should be compensated in some way for their services, and that working with little or no recompense, was working above what could be expected. This difficulty is compounded by the fact that some governments (as Bate cites South Africa in his article) actually provide cash incentives for registered volunteers (emphasis mine). This increasing problem began to undermine the entire program. The following example is offered as an illustration of the significance of the suspicion and discontent exhibited by this group: The volunteers had developed a repertoire of songs, poems and dramatic presentations that they have used for their own benefit, as well as for communicating to others about HIV/AIDS. When a visiting group from the USA expressed an interest in seeing some of these demonstrations, the HBC volunteers were asked to come together and share some of their songs, poetry and dramatic presentations with these guests. Several of the volunteers came and following the time of sharing with the guests, after the farewells were made, the home care nurse spoke to them. She expressed disappointment that more of them were not present and they told her of their disillusionment with the HBC program. They were upset because they were not getting the 'incentives' they believed they deserved. They said that the Partners in Hope training team were 'all getting fat, while we are getting thinner', or in other words, revenues were surely coming in for them that were being siphoned off by this researcher and the others in the Partners in Hope office so that the volunteers were not getting the food and money they felt they had coming to them. They were unwilling to believe the claim that was no wealthy funding agency supporting this research. 4. Another problem that surfaced during the first year, of which we were already aware, but will be listed at this juncture for sake of reference, was noted with a shift in enthusiasm from within the volunteer force after it had been active for approximately 6-8 months. The chairman of the committee, Rev. David Phiri, who had initially worked so hard to mobilize the effort of the HBC concept, was conspicuously absent from many of the activities. It was feared from the beginning that this man, who was already over-taxed with his obligations might not be able to keep up with the demands required of the committee chairman; but upon further investigation it was discovered that this pastor was purposely stepping back with the intention of allowing the progress of the HBC to diminish until it faded from existence. Apparently this pastor, who had joined so vigorously in the initial efforts, had done so with the presupposition that there would be either financial or material dividends forthcoming that would be a benefit to himself personally, or for his church. When the truth of what was promised (no financial or material incentives) materialized, he dropped out of the program. Although many of the volunteers from his church continued visiting patients, it none-the-less had a demoralizing effect on the entire program. When this researcher and the HBCPC became aware of these problems, a time of re-evaluation and examination was called for. 7.3.3 Chimbalame intervention research. As stated in the definitions cited by De Vos, what really distinguishes intervention research from program evaluation is that when intervention research is attempted, something new is created and then evaluated, whereas program evaluation assumes the prior existence of a program or intervention designed and developed by some else, perhaps long before the evaluator ever entered the field (De Vos 1998:365). It is therefore the goal of this research to endeavour to evaluate the intervention provided by the HBC program that was initiated by this project design. From the conclusions drawn above, the strengths and weaknesses of the program can be identified and a praxis theory can be formulated along with a strategy for its implementation. Following a strategic planning sessions with both the ABC Partners in Hope HBCPC and the Chimbalame HBC committee, the following measures were considered as a way forward in formulating the continuing development of the program: 1. It was first determined by querying the pastors of the various churches whose members were involved in the program that HBC was indeed an asset to the ministry of the local community churches. It was also established that efforts should be begun towards re-evaluating it to determine what would be the best way to move forward in such a way as to build upon the strengths and turn the weaknesses into opportunities for growth. This was difficult in itself, because as a whole, the pastors did not readily agree to further discussion with this researcher. From this lack of interest and commitment, it was surmised that the pastors of the various churches who had once begun so enthusiastically had ceased to consider the HBC program, which was initially begun as a program to equip their congregation with skills for visiting the sick, as something that held any meaning for their individual faith community. 2. The ABC Partners in Hope HBCPC felt that the following systems which were recently put into place would work to assist in achieving the continuing goals: a. The HBC Nurse would oversee the volunteers in a more controlled and organized manner, addressing the areas of accountability and resource management. b. A simplified record keeping system would be developed which would allow the volunteers to keep records of their work and visits. c. The Catholic mission would be contacted and discussions would take place to ensure a way to establish patients who are being cared for by the HBC volunteers to avoid patients being treated by two different systems. 3. The Chimbalame volunteers committee felt that the following interventions would be helpful in moving forward to meet the goals as outlined in this work: a. They wanted more 'incentives' such as financial backing for IGA (income generating activities). b. They wanted more food to be provided for the patients. c. They felt it was important, because of cultural expectation to provide some type of 'gift' item when visiting, which they thought should be provided by Partners in Hope. d. More meetings of the committee with the rest of the volunteers for support and emotional regeneration. e. More training and equipping sessions to continue to enhance their skills. f. A 'field trip' of the Chimbalame volunteers to Nkhotakota to see their program in action might prove enlightening and motivating. g. More medical supplies such as gloves, medicines, etc. 7.4 KANING'A CCAP GROUP EVALUATIONS The bulk of the discussion thus far has been surrounding the ramifications made by the initial class of trained volunteers and their impact in the local church and the surrounding community. There was a second class of volunteers trained which could pose as a second model for study as well. Along with many similarities with the first group under study, there are also a number of significant differences, which were explored earlier in this report (7.2). From within their pre-existing framework of benevolent work within the church, several ministries were already taking place at the time of their initial training. These ministries included such services as an orphan's and widows program. Although there was an effort at visiting the sick, it was not done in any structured or methodical way. The church leadership shared a perceived need of improvement in this area and was therefore eager for an opportunity to equip their congregation in such a way as to be more effective in this area. When the pastor and his wife were first approached with the idea of HBC for their church, they readily embraced the idea and stated emphatically that they would both be the first to sign up when the class would be offered (in actual fact, the wife did attend, but the pastor had too many other obligations to commit the required time to the training sessions). The HBC training allowed them to configure their HBC structure in whatever way they thought best and most workable given their own particular situation. As a group, they were given the task of determining how to proceed and develop their program. As a group, they discussed this issue and decided it would be best to work within their existing framework and develop their HBC program as a specialized component within this existing organization. Once the training was completed, follow-up was limited and only after initiation by Partners in Hope. After one month, they were contacted and evaluation was requested from Mr. Lungu, the primary contact. It was reported that things were going well and people were continuing to make visits in a meaningful way. Following this, the Kaning'a group became increasingly self-determining and did not require or request any further assistance or guidance from the trainers. In an effort to promote autonomy and self-sufficiency, the group was allowed to progress independently. The Kaning'a group was invited to various functions in conjunction with the Chimbalame group, but rarely were any of their volunteers present at any of these meetings or functions. When they did send representatives there was an obvious separation between the two groups. Although the Kaning'a group seemed open and ready to join with the senior Chimbalame group, an interesting development was observed in the reaction of the senior group. 7.4.1 Challenges faced when mixing the two training groups Those in the Chimbalame group became increasingly suspicious of the Kaning'a group, to the point of overt jealousy. They openly questioned who they were and why they were present at 'their' training seminars. Although they seemed to accept the fact that these too, were HBC volunteers working to serve the sick in their community they never seemed to fully embrace the concept of this other group belonging within their number. Their open antagonism worked sufficiently to keep the Kaning'a group from choosing to participate in any further cross-group meetings and functions. 7.4.2 Kaning'a one year evaluation At the time of the one-year evaluation, the Kaning'a group was once again contacted for an update. Rev. Khombe, the pastor of the church was contacted first out of respect for his position and to maintain the proper protocol of the strong hierarchy within the CCAP framework. As expected, Rev. Khombe was unaware of the current status of the Kaning'a HBC ministry and it was suggested that this researcher contact Mr. Lungu, the head of the compassionate service committee (Bungwe la za chifundo), who had already been functioning in the role of 'key informant' for the purposes of this study. Mr. Lungu had been involved with this researcher during some of the initial steps of development of the program within the CCAP. Upon meeting with Mr. Lungu, the following discovery was made: The HBC program initially began with great gusto and enthusiasm. It remained strong and functioning for several months and then began a serious decline, as the members of the group began to diminish their HBC activities. By the time six months had passed, the group had virtually given up all of their visitation of the sick and suffering and had gone back to functioning as they had previously, by ministering to the orphans and widows with minimal attention to the sick and suffering in their church body. After careful evaluation, several critical issues surfaced in explanation of this phenomenon. Although there were numerous factors involved in the dissolution of the HBC program, the one dynamic that seemed to undermine the program most significantly was the underlying perception that this was an 'AIDS' program. Following graduation from the training, Rev. Khombe earnestly promoted this new ministry in the church. All of the members of this new HBC ministry were presented to the church with their identifying group tote bags and chitenje (Malawian wrap skirt cover). It was explained before the congregational body that this group had been specially trained and equipped and was now going to commence visiting the sick and suffering in their church and local community. Rev. Khombe wisely made certain that AIDS was never mentioned during this ceremony; and there was no indication that this was to be an AIDS ministry at any time during the introduction or during the initial stages of the ministry. The group received a warm welcome from the congregational body and passionately began visiting the sick. As time progressed, the volunteers began to sense an underlying tension developing in the homes they visited. Although the patients were responding well to the visits, it was becoming increasing apparent that the caregivers were less than warm in their reception of the volunteers. The caregivers as a whole were becoming notably resistant to the visits of the volunteers and began making complaints because they were coming 'empty handed.' Eventually these increasingly negative comments lead to their suggesting it would be better if the volunteers did not continue to visit their relative. As the opinion increased that the volunteers were AIDS workers, the families of the patients became sensitised to the stigma surrounding the AIDS situation. This caused them to begin working towards ending the visits as a way to reduce the perception of their neighbours that their loved one was suffering from AIDS. Caregivers shared their concerns that others in the community who might be observing the visitation would conclude that the patient had 'misbehaved' or that 'you don't want a wife from that family', and other such suspicions. As these concerns increased, the hostility towards the volunteers increased proportionately, until they simply gave up and stopped the visitation. 7.5 IDENTIFIED PROBLEMS AND CHALLENGES 7.5.1 Identified Problem: Lack of peer-group support reduces effectiveness Many ministries have a built in sense of reward. Orphan care as an example, is very rewarding; as one ministers to the needy children, they are repaid with numerous smiles, laughter, and hugs of appreciation from the children. This can serve as a positive motivator, encouraging the continuing of such behaviour. HBC however, is often just the opposite. Instead of energizing the caregiver, HBC often takes from the caregiver as he or she gives of him/herself in an effort to serve the needs of the suffering. Often the emotional strain can be intense in dealing with people who are genuinely suffering as relationships develop between the patient and the volunteer. These relationships can be emotionally draining to the volunteer as they try to seek ways of assisting someone with increasingly difficult needs. In addition to this, once the volunteer has made a significant investment of his or her own time and energies into the patient in their effort to serve, the eventual death of that patient can be devastating to the volunteer. With these factors in mind, it is easy to see why HBC volunteers need to find ways, usually through the mutual support from group members, to strengthen each other and lift each other up with positive reinforcements to promote continued efforts. Without this, they will either consciously or unconsciously seek out ways of ministering to people that do not require such a depth of commitment. If the added factor of unreceptive caregivers must also be addressed, the volunteer may simply give up on their efforts to serve in this area, which is precisely what happened with the Kaning'a group. When asked whether there has been any change in the way the church is addressing HIV/AIDS issues, the key informant responded affirmatively that the church leadership is indeed addressing the issues of HIV/AIDS from the pulpit. When questioned further, about just what types of messages are being given it was found that although the speakers are beginning to talk more about AIDS in the open in the church, what is being said is not productive, but rather serving to reinforce the old attitudes suggesting that those suffering from HIV/AIDS are 'getting their just rewards'. 7.5.2 Kaning'a CCAP Intervention Research. Following a strategic planning session with the Kaning'a key informant, the following measures were considered as a way forward in formulating the continuing development of the program: 1. It was first determined that the HBC program was an asset to the ministry of the church and efforts should be begun towards re-evaluating it in an effort at re-establishing the viability of the HBC program. 2. The key informant agreed to confer with others in the group to evaluate their perceived needs and difficulties as they considered the way forward for their HBC program. 3. The ABC Partners in Hope HBC Supervisor and Medical director would be consulted and queried regarding their thoughts in the continuing development of the Kaning'a CCAP HBC program and these ideas would then be shared with the Kaning'a CCAP HBC group or their designated leadership (probably the key informant). 4. It was suggested that the Kaning'a CCAP HBC group be taken to Nkhotakota so that they may interact with the volunteers there and observe first hand how their program works in order to better understand the interactions and methodology. 5. A focused 1-2 day seminar will be provided to the Kaning'a CCAP volunteers with the goal of re-energizing and motivating the group to regroup and begin moving forward towards their goal of providing compassionate care and nurturing to those who are sick in their congregation and community. 6. Two influential members of the Kaning'a CCAP women's guild are to attend the NetACT AIDS Awareness seminar, in an attempt at beginning to retrain the church leadership (who will then both by example and by direct intervention begin to change the paradigm mindsets of the parishioners and caregivers.) 7. Formal address of the Kaning'a Session with the attempt at education and destigmatization of the HIV/AIDS pandemic within this congregation. When discussing the NetACT HIV/AIDS Awareness seminar, the key informant felt it would be very beneficial for the church, and in particular the church leadership, to be exposed to such ideas. It was therefore suggested that a brief 'taste' of the seminar be given to the Session so that they would have the opportunity to seek additional training if they so desired. Mr. Lungu (the key informant) was unable to meet with the volunteers as intended, so another meeting was scheduled. Prior to this meeting, this researcher and Mrs. Grace Banda, the HBC Supervisor met with Mrs. Khombe (wife of Rev. Khombe), and Mrs. Juma, who were both attendees of the NetACT HIV/AIDS Awareness Seminar developed by Christo Greyling, as a precursor to a meeting with the entire home care visitation group. From this productive meeting several essential points came to the surface to be further explored and addressed. Mrs. Khombe, and Mrs. Juma, who had made commitments to the entire NetACT group for continued follow-up and action with the other women representing the women's guilds of the other CCAP churches in attendance had done nothing towards reaching the goals to which they had committed. This exploratory visit served as a catalyst to renew their enthusiasm and get them back on target for the interchurch movement in this area. Once committed to moving forward with their previous commitment, the concept of HBC was discussed, along with the ideas outlined above that were suggested by the home care volunteers themselves. Because of the devastating effects of the perception that the volunteers were actually 'AIDS workers', it became crystal clear during these discussions, that it was essential that the church's efforts towards HIV/AIDS awareness and change be kept obviously and deliberately separate from the HBC initiative. Because it is essential that the perception of the congregation undergo a paradigm shift in its concepts of the purposes of HBC, from this meeting the following ideas were discussed as reasonable possibilities: All AIDS training attempts for the Kaning'a CCAP were to be encouraged, but to be made obviously separate from any and all mention of HBC. Several areas of HIV/AIDS training that would be further discussed and implemented by those in the church will include: 1. Training, such as the NetACT HIV/AIDS Awareness Seminar designed by Christo Greyling, (to be provided by those who had attended the conference with Mrs. Banda as a consultant), would be given to those individuals set apart and specially designated as counsellors for the youth and young people in preparation for marriage (the alangizi). This training seminar would be hosted by Kaning'a CCAP, but would be open to the alangizi from all of the local CCAP congregations. 2. The already existing organization of pastor's wives from all local denominations which meets monthly has asked for further training in HIV/AIDS, and in response to their request, this seminar will also be offered to them. Following the input from this meeting, the leaders of the Kaning'a CCAP HBC met with this researcher and Mrs. Banda. Although they were anticipating hearing the details of how the previous suggestions were to be implemented, they appreciated the concerns and wisdom in keeping the HIV/AIDS issue completely separate from the idea of HBC. In the discussions from this meeting, the following ideas were brought forward. A new goal was developed, that of desensitising the congregations from the negative perception already in place. It was unanimously decided that the first priority would be to change the perception of the HBC program within the congregation and community. Following this, other steps geared toward re-establishing the program could be instituted. 1. It was determined that efforts should be made to slowly make a paradigm shift in the attitudes of the faith community by subtly and deliberately beginning a campaign designed to change their perceptions by the following means: a. Change the name. 'Home Based Care' has begun to be recognized in the community as AIDS workers due to this name being applied to more and more HBC initiatives in the community which are dedicated to that work. It is therefore deemed important to choose a name that will not be associated with this negative concept. b. In an effort to promote the idea that the home visitation program was not just an AIDS program, an educational program strategically designed with the implicit purpose of changing the perception of the home visitors would be executed (7.8) and overtly promoted within the church on a regular basis. 2. By making these subtle but deliberate changes, the perception will slowly evolve from 'AIDS workers' to caregivers for individuals who are homebound due to chronic disease of all types, including, but not exclusively for HIV/AIDS patients. 3. Re-evaluate the attitudes and perceptions of the faith community, on a regular basis by the home care volunteers, noting any shifting in sensitivity. 4. Re-evaluate the attitudes and perceptions of the faith community on a regular basis by members of the congregation at large who are not involved in the home care initiative, noting any shifting in sensitivity. Due to the fact that it took approximately four to six months for the original program to slide from a status of 'decline' into actual 'death' of the program, intervals of no more than three months would be recommended between these times of re-evaluation. 7.6 MOVING FORWARD 7.6.1 Moving Forward: Chimbalame The following issues were carefully considered and discussed by the Partners in Hope planning and training team: 1. The original goals and vision for the development of the HBC program which were taught and discussed at length during the training session, that of HBC serving as an avenue of benevolent ministry whereby the 'volunteers'4 could tangibly demonstrate the love of Christ, as commanded in Scripture, to the sick and suffering, were no longer the motivating factors by the volunteers. 2. The volunteers were no longer serving solely as a benevolent ministry to the sick and suffering without any thought of gain or reimbursement. Instead their primary focus, which had been to demonstrate the love of Christ to the sick, has shifted to seeking 'incentives' to enhance their personal (as well as the patient's) welfare. 3. The initial plan to help the church develop and enhance their own visitation program to more effectively meet the needs of the sick in their congregations has been completely sidelined. The 'committee' had taken all responsibility for home visitation and the church was no longer directly involved, if at all. 4. Actual patient visitation has been reduced and is often sporadic. Patients are being seen who are already associated with other home care initiatives. 5. The volunteers are becoming increasingly dissatisfied with their role, believing that they are not being treated fairly and insinuating that Partners in Hope is taking food and money that was supposed to come to them, as well as not providing 'incentives' they feel they were promised and deserve. Following discussion and consideration of the above situation, it was determined by the HBCPC that despite efforts aimed at moving the program back towards its original goals, the outlook of the home care volunteers and their relationship with Partners in Hope has continued to deteriorate. Because of this, the HBCPC has decided to completely disband the Partners in Hope HBC volunteer visitation program in Chimbalame. A letter detailing this was shared with the 'committee' by the Home Care Nurse to ensure that there was no question or misunderstanding as to what was happening and why (Appendix K). Volunteer efforts have not succeeded in this community by this and many other organizations due to several significant reasons, such as: extreme poverty, and the fact that virtually all of the NGO's are paying their 'volunteers' either monetarily or with other incentives (Appendix J), so people have come to understand payment for services as the standard. Because of this the following recommendations are being considered for the purpose of moving forward: * Develop a paid, professional medically based HBC program with the ABCCC. This way, the health care workers will be compensated for their service and accountability and quality of care can be demanded in return. ABCCC currently employs one full time nurse. It is proposed that two home health aide workers should be employed (either hired as already trained, or trained by ABCCC) to be supervised by the nurse. More personnel may be added as the need demands and funding becomes available. * Disband the current HBC Partners in Hope program (Appendix K) and start over. * Begin training in a local church to assist them with the development of their own visitation program as initially envisioned by this study. In order to do this, the following modifications should be instituted: o Work within only one church at a time. o Do not work with any of the churches that have already been associated with the previous effort, as those churches have demonstrated a lack of interest and accountability. If they are genuinely interested, they are already equipped to move forward as they already have trained volunteers within their congregation that can institute the program. o Make certain that the pastor is fully supporting, and even participating in the program. o Make efforts to help the people work within their own congregation (at least initially) and keep the entire program under the management of an existing (or newly established if necessary) benevolent committee in the church. o The home visitation program will be accountable to the church benevolent committee; they will NOT be accountable to ABC Partners in Hope. o The home visitation program will not be called 'HBC' because in this local environment, that has become synonymous with 'AIDS workers'. In response to the abovementioned letter (Appendix K), the following letter was hand delivered to the HBCPC: From: Village Committee Partners In Hope Mtandire Attn: Dr. Perry Jansen Mrs. Janet Brown Mrs. Grace Banda Sr. Anna Mpanje Date: 26 November, 2003 Dear Sir/Madam SUB: DISBANDMENT OF PARTNERS IN HOPE Reference is here made to the above subject. We are greatly disappointed for disbanding partners in hope without clear reasons to our understanding. Although you have said so, this will not discourage us from visiting our patients whom we treat as our Brothers and Sisters as you taught us in reference from the book of 1 John 4v19 and 1 Corinthians 13v1..... By doing so we are encouraged by this verse from the Bible Luke 17verse 1. Since in your letter which you wrote to us, you stated that Sister Anna Mpanje will continue to minister to the sick in our community, so we request to meet Sister Mpanje before she resume her ministry. Lastly, we would like to thank you for all services you rendered to us during our cooperation. Please take note that we will continue ministering despite your disbandment. GOD is able and he will lead us. WE REMAIN (signed) M. Malenga M. Gamphani H. Ofama C. Tepani It is believed by the HBCPC that the intention of this letter was designed to cause concern and remorse on the part of the HBCPC, but the actual effect is quite different. From the intention cited in this letter, we will continue ministering, it is clear that the volunteers have truly been adequately trained as to enable them to continue with the work in a manner close to the original vision. This uplifting and encouraging reassurance that the ministry will continue, with total 'ownership' (1.3) now being transferred to the volunteers themselves is a lesson in responsibility. It is obvious from this response, that the longer ties were maintained with the committee to ABC, the growth of the dependency continued. In much the same way that a young baby bird must be forced out of the nest in order to fly, the Chimbalame HBC has learned to spread and stretch its own able wings. This lesson has proved invaluable to both those who are now taking ownership to carry on with the work; as well as those of us in the HBCPC who struggled with the agony of what appeared to be a failure as the 'official' ABC Partners in Hope HBC was dissolved in defeat. This timeless lesson, of painfully practicing 'tough love5' to allow one's progeny to develop independence has been played out and relearned with each generation since God first created the family. Hindsight draws one to understand that the painful dissolution of the HBC was the very action, which was necessary to enable the volunteers. It was only by this forced action that they became empowered to do the task they had originally trained for and committed themselves to do. Further study on this point, as a follow up to their intentions would be of value to ascertain whether or not they did indeed continue with the work they claim they are so committed to, as well as to study whether this reconfigured hypothesis, which was made as a result of this letter (the value of severing the relationship to activate the growth and responsibility of the group) is indeed accurate. 7.6.2 Moving Forward: Kaning'a CCAP Following the discussions with the Kaning'a CCAP elders and the Partners in Hope training team, it was determined that the first priority was to instigate a paradigm shift in the mindset of this faith community. After discussion as described above, it was decided that the only way forward was to make a purposeful and deliberate plan in an effort to 'move this mountain'. Slowly, deliberately, and subtly a campaign must be begun aimed at changing the mindset of the congregation. In order to do so, it was suggested that an effective way to accomplish this would be to borrow a method used in advertising and marketing6. Professional advertisers use commercials to continually place their product before the eyes of the consumer. In addition to frequent reminders, there is also an attempt to associate the product with something positive. This strategy was so effectively used by the Tobacco industries in the United States (aiming at capturing the youth), that laws had to be made in order to have them banned on television. By always placing a cigarette in the hands of happy, vibrant, successful, beautiful, wealthy people, the message was being instilled into the minds of the viewers that 'if I smoke X brand of cigarettes, I will be happy, vibrant, successful, beautiful and wealthy too!' Using this method of repetitive stimulus with associated positive imagery is the method decided upon by the group of elders heading up the HBC division of their church's benevolent ministries department. The goal was to disassociate the home visitation with AIDS workers. The name 'HBC' has become tantamount with AIDS worker, so the first thing the volunteers would do would be to select a new name that more closely identifies their actual purpose of compassion and mercy to the sick and suffering, from whatever reason. Therefore, instead of calling themselves 'Home Based Care', they have agreed to rename themselves Kaning'a Zachifundo7 Committee, which will have the idea of compassionate visitation to the sick and needy, but will disassociate itself from the AIDS crisis. Even though the knowledge remains that most of the sick and suffering ARE indeed AIDS patients, this can never be the overt focus. Secondly, instead of giving specialized HIV/AIDS training to the home visitors, it was decided that it must be obvious that the HIV/AIDS training which would continue to be promoted within the church would not be associated in any way with the home visitors. The third step in the plan is essential; because it is the key to helping the congregation change its perception of the home visitors. The faith community must subtly and repeatedly be exposed to ideas and imagery associating home care with issues outside of HIV/AIDS. In order to accomplish this the following plan was developed: * Monthly training sessions would be initiated on topics that are not associated and in fact very distant from AIDS related topics. (Suggested topics might include: how to help a family deal with a child suffering from chronic respiratory disease such as Asthmatic Bronchitis; How to provide emotional support to families of disabled children; Dealing with the aged; various Cancer topics; etc.) * These training sessions would be open to all interested, but it would be obvious that the training was designed for the home visitors. * Special speakers would be addressing each issue who had expertise in these areas. * One day a month (to be determined by the church) would be designated for training sessions. * Each Sunday, during announcements, a brief announcement would be made promoting the training session, and equating it with the work of the home visitors. This is emphasized here because it is the essential element of the plan. By repeating the message each week that the home visitors are dealing with various issues, in addition to AIDS, and receiving quality training in all these areas, the faith community will slowly change their perception to one that removes the 'AIDS workers' stigma, which has been so firmly associated with the current HBC program. With these steps in place, it is hoped that the mindset of the faith community will begin to shift to a more loving and positive one. Once these attitudes have begun to change, then the home visitation program can become the vibrant program of compassion and mercy that Christ commanded His church. 7.7 FINAL CONCLUSIONS AND SUMMARY It is no secret that HIV/AIDS is real, and it is devastating the world and the continent of Africa in particular. There is no one cure or one approach that will eradicate this plight. The Church stands in a pivotal spot for making an impact on both the micro and macro levels as it issues its response to this crisis. This study has approached this mountain with one way to begin chipping away at this pandemic. Changing attitudes one by one is a slow process, but it is a good, solid process that will cause erosion to the very foundation of the problem. This project studied the use of HBC as a vehicle of change as an attempt to develop the means by which a paradigm shift of attitudes can occur. Although initial impressions when reviewing this research seem disappointing in the light of the (probably) over optimistic image of change that was envisioned at the beginning of the study, there have none-the-less been some positive areas of contribution which can be ascertained from this work. Change comes slowly, even when the change is for the good, or even for the best. Such is the case with the changing of attitudes between the church and the HIV/AIDS community. At the beginning of this study, it was hoped that using HBC as the vehicle of change would begin a series of positive revelations as people began to realize the impact of presenting the love of Christ to those who were suffering with HIV/AIDS. With a 'domino effect' this change would then impact others who would initiate change in not only their own lives, but those in their sphere of influence as well. Unfortunately, the reality of the fact that change comes slowly remains a reality. The good news is that change does come. Through the process of this study, hearts have been touched and individual lives have been changed, and changes are continuing. Although overt paradigm shifts in the thinking and actions of the faith communities studied did not change significantly as a whole, there were notable changes in the attitudes of many individuals from the various churches participating in the research (Appendix L). Lessons have been learned during the development of this project that can initiate changes, which when implemented, can alter the path enabling a more optimal result to be experienced. At the beginning of this dissertation, a vast area of opportunity for the prevention of HIV/AIDS, as well as an outlet for compassionate care to be provided to those suffering from this disease was demonstrated as being overlooked by not incorporating the local church in the plan for the management and ending of the blight of this dreaded disease. This statement remains true. However, this study has shown that the church can make a difference. Home visitation programs, initiated as a grass-roots movement within the local church, can touch lives on the micro level as the faith community follows the mandate set down by Christ to love one another. When lives are touched by all of God's people, it will begin change on the macro level as well. By gaining from the lessons learned from this study, new endeavours can begin with the same types of optimistic goals to serve the sick and dying in their communities and avoid some of the pitfalls experienced in this project. The failure of the HBC to meet its stated goals, although admittedly disheartening, must be re-evaluated in light of the unanticipated positive outcome of uncovering a faulty paradigm regarding the paramount importance of issues such as the overpowering impact of poverty. Important information has come to light through the process of this research, in relation to the immense problems associated with the extreme poverty suffered by so many in Africa. When the president of South Africa, President Mbeki, announced to the world8 that 'poverty', not HIV was the cause of HIV/AIDS disaster (Sithole 2000), most of the world was amazed that someone in such a position could make such a profoundly ignorant statement. Due to the dramatic effects poverty has had on the study described by this dissertation, this researcher has come to understand how his statement does hold meaning and relevance. It is an unfortunate fact that although acknowledged by most westerners, the stark issue of poverty, and the seemingly endless ramifications associated with it are indeed significant enough to be a cause of HIV/AIDS. The hopelessness associated with such dramatic poverty - which is only one aspect of the downward spiral of despair; high risk behaviour, lack of understanding and knowledge, etc., has sucked those in this plight deeper and deeper into this continually escalating crisis. Unfortunately, this researcher is not the only one who has had such misguided thoughts as, 'ok, there is the poverty issue, now let's move on to the 'real' problem....', indicating a total lack of appreciation for the magnitude of this factor in the equation of HIV/AIDS. Further research in this area is necessary to prevent continued disappointments as benevolent organizations and governments attempt to 'fix' the problems of Africa without a full understanding of the complex ramifications involved in this matter. This research project has also served to reinforce the idea that it is unwise to attempt to 'plug in' western ideas into an African setting and expect to have a predicted outcome such as what might take place in America. HBC is a growing, thriving business in the USA. It is serving the needs of many people there that are suffering with illnesses causing them to be homebound. Trying to import that same HBC program, that has proved itself successful in the USA into an African setting, without taking into account such factors as: poverty (mentioned above); transportation and communication difficulties; the deep seated stigma associated with HIV/AIDS; lack of resources; etc, is a prescription for frustration and failure. HBC can work in Africa, but it must be designed with perceptive perspicacity to be sensitive to the complexities of the African situation. This dissertation has chronicled the attempts by this researcher to explore ways to bring a good program into the African setting, making the adjustments necessary to ensure its survival and productivity. Lessons have been learned along the way which demanded a change in course and the development of new ways of approaching the difficult issues surrounding those suffering from AIDS. An example of this is the problem of stigmatisation. Although this problem was anticipated, and measures were taken to avoid the impenetrability associated with it, it was none-the-less a substantial factor in the strangulation of one of the pilot programs under study. From this, and other lessons, new praxis theories were developed to respond to the issues in more effective and meaningful ways so that forward movement and growth could be maintained. In the end, as with many 'good' ideas, not every program will work in every situation. Through numerous up-hill attempts to reach the goals set out in the initial steps of the program, there were eventually enough pitfalls in the course to cause the apparent failure of one of the study groups. From the beginning, it was considered essential to allow the groups to evolve on their own course in order to allow them to take the ownership necessary to develop a thriving program. Hindsight, which is always 20/20, has allowed this researcher to understand that new programs such as HBC, which have no precedent in this culture, require more direct intervention and direction to keep the participants mindful and directed toward the goals than was given. The risk of the perception of it being an 'ABC program' would still have been present, if not intensified, but the fact remaining, that this fear eventually became the reality, even with the precautions taken. Therefore, it would be recommended for the next time this process is begun, that more continuous oversight be maintained, to keep the program goals and vision always in the forefront. Strongly keeping the mission of the project always as the target may have helped to overcome some of the deviations from the path which took place eventually leading to the development and following, of some unworthy and self-serving goals. The final, unexpected result of the Chimbalame group's reaction to the official disbandment of the organization indicated that although the above recommendation is still pertinent, in order to sever the donor dependence, there must be a time when it is made clear to all, that the community will take full and complete responsibility for the continuance of the work. From general observations of how a gradual hand-over of authority and responsibility has worked in the other situations (in many different areas, such as the gradual independence of various types of church ministries), leading to a continued dissatisfaction and frustration on both parties; this researcher believes that it would be a valuable study to explore the implications of such abrupt and total separations. As in the case of this research, while proving initially painful on both sides, it ultimately did prove to be the necessary catalyst for the development of what is hoped would be genuine growth and autonomy. Looking forward to reproducing this type of a work in a new situation, one can be optimistic in achieving a more hopeful outcome based upon the lessons learned from this study. Ideas that were outlined previously (7.6 and 7.7) can be used to implement ways of achieving better and more predictable results in the future. The praxis spiral must not end in a circle, but continue in the upward spiral towards solutions for these most difficult problems. The initial praxis model (5.8) for this project concerned the following aspects: Purpose Establishment (1): Alienation towards AIDS sufferers by those in the Church Evaluation (6): Goal Setting (2): Re-evaluate goals and make new plans to assess the poverty issue more fully as a foundation towards rebuilding the HBC program Seek out an organized system to help the church meet the emotional needs of those suffering from AIDS Correction (5): Planning (3): The magnitude of poverty is overshadowing the goals of benevolent HBC visitation. Develop HBC to train and develop and enhance the church's visitation program Action (4): Develop curriculum to equip HBC volunteers with skills necessary to effectively provide emotional and spiritual support to those with AIDS. Upon evaluation, it was determined that the original problem leading to the Purpose Establishment was premature. It became apparent that an adjustment of the initial plans was in order, leading to the second round of the praxis spiral: Purpose Establishment (1a): Abject Poverty rendered the established volunteers unable to effectually provide the benevolent care necessary for HBC to prosper. Evaluation (6a): Goal Setting (2a): ?? Re-evaluate the continuing need of alienation to AIDS sufferers in light of the overwhelming poverty issue and determine the next step towards relieving the problem. Correction (5a): Planning (3a): ?? ?? Action (4a): ?? It is essential that the praxis process not be considered a circle, in which connecting the ends of the loop signals the completion of the project. Instead, the praxis process must be considered as a continuing spiral with the evaluation phase being recognized as the starting point for the next circle of the spiral. The large grey arrow in the figure above is to depict the connection between these two levels of the spiral as new problems are identified and addressed, based upon the initial research and understandings reached during the process of the first circle of the spiral. Steps 1-6 as indicated in the first spiral produce the information and research necessary to proceed to the adjusted second circle of 1a-6a. These steps in turn, upon evaluation and reflection will be interpreted to determine the adjustments necessary to begin the next phase of the process (not shown in the diagram) 1b-6b, and so on. In juxtaposition of the findings demonstrated by this research, with the praxis process outlined above, the essential nature of the continuation of this study can be seen as a step in the path towards finding realistic, workable resolutions to some of these crucial issues involved in the multifaceted problems associate with AIDS. Areas requiring further research include not only the obvious areas of IGAs to produce ways to relieve the actual poverty, but also those areas affected by poverty in more indirect ways, such as determining the emotional and spiritual needs associated with abject poverty and the associated sense of hopelessness, dependence and loss. In addition to this, would be the theological dimensions revolving around these issues and the relationship between the hope and faith of those who may feel abandoned by God. These are only but a few of the many issues that require further exploration and discovery. In conclusion, it must be stressed that although the original optimistic goals proposed by the research hypotheses were not fully reached, other important issues, such as exposing erroneous paradigms (particularly those held by the more affluent, western mindset) have been brought to light. The importance of dealing holistically and concretely with existential issues in combination with relating biblical love and compassion revealed remains an area for further study and research. The continuing fact remains that attitudes need to change in order to slay this monster of HIV/AIDS. The church with her bounty of human resources, if equipped with not only knowledge and understanding of the problem but also and most importantly; when the church uses the power of God's love as a demonstration of Christ, an impact can be made that will shake the world. A mountain isn't moved in a day but if, as in the following Chinese folktale (Frankel 2002:23), the shovel is filled with dirt day by day by day, it will one day be moved. Once, there was an old man, who, everyday, would walk to the mountain with his shovel. 'What are you doing, old man?' people would ask. 'Are you trying to move that mountain?' He would not respond, but only keep digging at the base of the mountain. And every day he would return to the mountain with his shovel, digging away, stubbornly determined to move the mountain. And every day, people would tease him and taunt him: 'You foolish old man, do you really think you can move that mountain?' After digging with his shovel day after day, month after month and year after year, a young girl approached him, and said, 'Old man, do you really think you can move that mountain?' And he looked at her and said, 'Little girl, I don't think I can move this mountain. Not by myself. But if my sons and grandsons return to this mountain with their shovels, generation after generation, yes, little girl, we can move this mountain. In the same way, AIDS will not disappear tomorrow, but if one person's attitude is changed and they reach out to someone infected or affected with HIV/AIDS with the love of Jesus Christ, then two people's lives have been changed. If those two, change two more.... The cycle doesn't have to spin viciously downward, but it can instead be an uplifting cycle of hope as people share Christ's love and compassion with their brothers and sisters who are suffering from this plight. It is hoped that the lessons learned during this study will be instrumental in assisting the next attempt to be even more fruitful and productive. The motto of Partners in Hope, 'we love, because He first loved us' (1 John 4:19), continues to be as valid today as it was two thousand years ago. Therefore, we must continue to move forward in our efforts to demonstrate His love and move this mountain of HIV/AIDS. 1 The Roman Catholic work had been established years ago and was primarily focused on meeting some of the physical needs of the community in a multi-faceted approach. Although they were making an impact, it was seen as spread too thin to be effective. Partners in Hope's focus was inversed from the Catholic work in that it was spiritually based as its primary task, with the meeting of physical needs as secondary. 2 When this researcher came to Malawi in 1997, the average life expectancy was 47. Various reports give different findings to this question, some as low as a current life expectancy of 36 years for Malawi. 3 This came to a alarming head when it was discovered that one of the patients was prescribed Lasix (a diuretic) because of fluid retention by another HBC physician and also by the Partners in Hope physician. This was caught quickly, but nonetheless had the potential of serious consequences for the patients health and well-being. 4 The concept of 'volunteerism' (charitable work without expectation of payment for services) was explained in great detail during the training sessions. 5 'Tough Love' is a type of controlled discipline used in situations where normal discipline is ineffective. It is particularly useful in dealing with unacceptable situations in child-rearing and marriage counseling to help those involved understand boundaries and acceptable responses in a loving situation. More information can be found at the following website: http://www.toughlove.org/. 6 As proof of God's sovereign plan in all things, it was surely not 'accident' that this researcher has a background in health care marketing strategies. 7 Zachifundo is a Chichewa word depicting the understanding of a feeling of pity towards another person, which would lead one to want to give a gift to offer comfort to the one suffering. 8South African President Thabo Mbeki opened Africa's first international AIDS conference (July 2000) by telling thousands of health experts that poverty was the continents biggest killer. 264