University of Stellenbosch HIV/AIDS ALIENATION: BETWEEN PREJUDICE AND ACCEPTANCE Appendix JANET L. BROWN Dissertation presented for the Degree of Doctor of Theology At the University of Stellenbosch Promoter: Professor H. JURGENS HENDRIKS April 2004 Appendix Appendix 1 Appendix A - Churches participating in the Nkhotakota Program 284 Appendix B - Curriculum Vitae for Mrs. G. Banda 285 Appendix C - Initial Training processes for facilitators. 290 Appendix D - Home Based Care Volunteer Training Manual 293 Appendix E - Instructions for Surveyors 322 Appendix F - Phenomenological/ethnomethodological Strategy with in-depth interviewing 324 F.1 Reverend Akiwa Chimsolo 324 F.2 Abiti (Mary) Ali 325 F.3 Mr. Khirex Asimu 326 F.4 Abiti (Martha) Suwedi 328 F.5 Joyce Chipalasa 330 F.6 Mr. Peter Chijoge 331 Appendix G - Single-system designed randomised cross-sectional quantitative survey. 333 Appendix H - The Idea of Limited Good 336 Appendix I - Projected Project Cost by Department 338 Appendix J - Expenses underwritten for 'volunteers' by World Relief 341 Appendix K - Letter of dissolution to HBC volunteers 342 Appendix L -Testimonials from Individuals participating in the churches involved in the study 343 Appendix A - Churches participating in the Nkhotakota Program Churches Participating in the Nkhotakota Program (World Relief) The core group of churches which remained interested in reaching out into the HIV/AIDS communities once it was determined that they would not receive free handouts and support were as follows: Anglican Churches: * Chididi Holy Trinity Church * St. Cyprian Church (Kasamba Parish) * Chombo Parish * All Saints Cathedral * St. Joseph's Church (Katimbira Parish) Pentecostal Churches: * Living Waters (Msenjere) * Good News Revival Church (Chididi) Baptist Church: * Chididi Baptist Church Appendix B - Curriculum Vitae for Mrs. G. Banda GRACE REJOICE BANDA (MRS) 1. Personal Information Surname : Banda First name : Grace Other names : Rejoice Maiden name : Mwenifumbo Nationality : Malawian Date of Birth : 13 September, 1950 Marital status : Married with six children Religion : Christian Languages : English, Chewa, Yao, Tumbuka, Kyangonde Hobbies : Netball, baking, reading and travelling 2. Contact Address P. O. Box 30805 Lilongwe 3. Tel:(285)770363 3. Educational background 1986-1988 Bachelor of Education Institution University of Malawi, Chancellor College 1968-1971 Diploma in Education Institution Soche Hill College, University of Malawi 1964-1968 AO@ Level GCE Institution Mzuzu Government Secondary School 4. Current Position 2001-Present Partners in Hope Home Based Care Supervisor ABC Community Clinic HIV/AIDS Counsellors 5. Teaching and Administrative Experience 1998-2000 Headmistress Mkwichi Secondary School 1996-1998 Deputy Headmistress Lilongwe Girls Secondary School Head of Science Department 1988-1996 Teacher of Biology, Lilongwe Girls Secondary School And Agriculture 1975-1988 Teacher of Biology, Blantyre Secondary School Geography and Agriculture 1974-1975 Teacher of Biology Masongola Secondary School and Geography 1972-1974 Teacher of Biology Umbwi Secondary School and Geography 1971-1972 Teacher of Biology Ntcheu Secondary School and Geography 6. Career Development and Professional Training 6.1 Training February 2003 CABSA Training Programme for HIV/AIDS Facilitators 'Churches, Channels of Hope' April 1987 MSCE Examiner Training September 1986 Workshop by MCDE on the preparation of Course Materials in Biology and Geography August 1984 Workshop on the teaching of Biology and Geography at MSCE level 6.2 Development 1993-2000 Committee member for STAM (Coordinator for Central Region) 1977-2000 MSCE Biology Chief Examiner 1993-1998 Head of Science Department, Lilongwe Girls Secondary School 1990-1998 Disciplinary Committee, Lilongwe Girls Secondary School 1990-1998 Senior Mistress, Lilongwe Girls Secondary School 1990-1998 Patron of the UNESCO Club 1990-1998 Career advisor, Lilongwe Girls Secondary School September 1996 Appointed by MANEB as Assistant Chief Examiner in Paper II Biology August 1996 Appointed to be member of MIE Secondary School Curriculum Review (Biology) Committee Apr-July 1994 Acted as Deputy Headmistress, Lilongwe Girls Secondary School 1991-1993 Acting Head of Science Department (Internal Arrangement) 1990-1992 Chairperson, Parents-Teachers Association, Lilongwe Girls Secondary School 1972-1988 Umpire, Girls Netball at Umbwi, Ntcheu and Blantyre Secondary Schools, respectively. 7. Professional Development 16-21 April, 2000 Participated in the training of teachers in the Awhy Wait?@/Family enrichment Curriculum@ - a curriculum Teaching life skills for young people to prevent the spread of HIV/aids, Scott Theological College, Kenya. 15-19 March, 1999 Attended a workshop on Gender Equity by CODE and C.I.D.A., Lilongwe, Malawi 12-15 April, 1994 Participated in the character development and Why Wait?/Family Enrichment Workshop, Lilongwe, Malawi 8. Special Education Interests ? Special Education for people with disabilities ? Student/Teacher relationships ? Student Counselling 9. Memberships held 9.1. Professional Membership 1997 to date Member of CODE (Canadian Organisation for Development in Education) Local Advisory Committee June 1996 to date Senior Examiner Biology MSCE June 1996-July 1998 Board member of the National Library Service July 1998 to date Member of MSCE and JCE Biology Syllabus Committee 9.2 Membership in Christian Organisations ? Treasurer in the Lingadzi C.C.A.P. Women=s Build, Lilongwe ? Member of PACWA, Lilongwe Branch ? Member of Women Aglow, Lilongwe chapter 10. Referees Dr. Kuthemba Mwale Ministry of Education Private Bag 328 LILONGWE 3. Dr. Lucy Binauli Home Economics Department Chancellor College P. O. Box 250 ZOMBA. Professor Dick Day Why Wait? / Family Enrichment Programme P. O. Box 250 ZOMBA Appendix C - Initial Training processes for facilitators. The actual facilitators will be selected from two different categories. Although similar in many ways, there will be substantial differences in the training they will receive. The first group of facilitators will be African Bible College students. As part of their regular curriculum of study, they are receiving instruction in Biblical studies and general knowledge. In preparation for the Home Based Care visits, they will also receive supplemental instruction in the following areas: basic counselling skills (which will include listening techniques and development of interpersonal relationships), psychology of death and dying (including classic instruction in this area by Kubler-Ross's 'Five stages of Grief') (Kubler-Ross 1997), grief management, and empathetic understanding. In addition to these relational skills, they will also receive instruction in basic assessment skills, HIV/AIDS pathophysiology, causes and treatment modalities, along with aseptic technique, hygienic principles and sanitation procedures. Instruction in these areas will be with a multifaceted approach. In addition to visiting the Nkhotakota field and interacting with and participating in the programs there, their instruction will also include classic classroom instruction, informal and structured group discussions, empirical reading and research and private consultation and individual and small group counselling. The second group of facilitators will be from the churches participating in the development of their own home care programs. These individuals will be from varied educational, age and economic backgrounds, but will share in their common interest in reaching out to the sick and dying in their communities. Criteria into the initial training group will be quite wide, with the only prerequisite being their love for Christ and a 'heart' for this particular type of outreach. As they progress through the training process, a natural selection will take place as they either grasp the information provided, or fall away as they realize that it is not suited to their interests. Training for these church volunteers will be undertaken with a multi-level approach. The initial entrance phase of training will consist of basic skills development, designed to equip them to visit those who are sick without spreading germs or disease, provide comfort and gentle kindness through the sharing of their selves and their faith. Although the details of this training are currently in the formation level of development as this text is written, it is anticipated that this level, or 'Phase I' training, will consist of approximately four, weekly sessions. These sessions will train and equip the volunteers in the following areas1: * Basic hygiene, aseptic technique and prevention of cross-contamination * Listening and observation skills, with a focus on confidentiality and ethical concerns * Spiritual guidance and sharing their faith and hope * Basic comfort measures, needs assessment Upon completion of this initial phase, the volunteers will be ready to enter the field, and visit the patients in a safe and meaningful way. Once the initial training has been completed, and the volunteers are in the field, additional training will be given on an 'as requested' basis. Although it is anticipated that the following areas will be requested, these will not be imposed on the HBC visitors in order that they will grow in their sense of 'ownership' of the program. Because of the longitudinal nature of this research, and with the realization that the ABC facilitators will be somewhat 'intermittent' due to the nature of their studies, school breaks, holidays and eventual completion and graduation, it is essential that the local church not see this as a 'program' they are participating in, but rather, they must have possession of it for themselves and see it as their own program. Therefore it is believed that if they are able to make the choices and 'steer' the program as it develops in their own congregation, they will then consider it to be their own effort and with that, develop a stronger commitment to ensure the success and growth of the program. Additional areas of training that will be available to participants would include, but not be limited to the following: * In depth training regarding the anatomy and pathophysiology of HIV/AIDS * Signs and symptoms of other related disease physiologies * Medical interventions, which might include: physical assessment; nursing care (beyond the basic comfort measures learned in Phase I); medical interventions, which might include such things as medication administration and basic treatments (would only be done under qualified medical supervision) * Community resource awareness * Spiritual counselling and increased training in counselling and grief assessment and care * Biblical instruction * Interpersonal relationship building * Selection and training of more volunteers * Medical record keeping and reporting In order to maintain quality control, the curriculum development and training will be provided mainly by this writer, who is a Registered Nurse, with a specialty in cancer nursing and support group facilitation; Hilary Edwards, (B.N., R.G.N., Diploma in Counselling, E.N.B. 931 Care of the Dying), currently working with the VSO as a palliative care specialist and Hospice Nurse; and Mrs. Grace Banda, who has a background in education, and is the national director of the 'Why Wait?' program for HIV/AIDS prevention in Malawi and is currently serving as a program manager and counsellor with the African Bible College Community Clinic 'Partners in Hope' HIV/AIDS awareness and care program. In addition to the skills she will bring to this committee, as a native Malawian, Mrs. Banda will be a valuable resource in making certain that the curriculum is culturally sensitive, as well as translating it into Chichewa, as it is anticipated that the actual instruction of the church volunteers will be done in Chichewa to promote increased understanding and comprehension. Appendix D - Home Based Care Volunteer Training Manual (teaching notes) I. Session One - Basic Volunteer Training I. Introduction to Volunteering Volunteer work is unique and special. It will be appreciated (usually) by the sick person because it is not carried out for financial reward but for love of fellow man, community spirit, increase feelings of self worth, esteem or to carry out God's wishes for us. * Volunteers need to consider why they have chosen to help others in this very valuable way. What is their personal motivation? (Discussion groups!) * Perhaps a need to feel needed * Spiritual wish to help others - practice Christianity * Help find future employment - take up nursing * Gain references from church members * Increase status - life satisfaction What motivates these volunteers to do such difficult work in the community with HIV/AIDS HBC? Remember volunteers have needs too. They will require training, ongoing support / interest, debriefing for difficult cases, encouragement and praise. They may need recognition of doing such sensitive work, such as incentives, maybe a certificate for attending training or follow-up meetings. Name badges or printed 'T' shirts or special chitenge or carrying bag / umbrella. What qualities does the HBC volunteer require to carry out visits to the sick? * Respect for other's views, beliefs, lifestyle, religion, attitudes, culture status, class, etc. * Acceptance of the sick person's rights, whether they wish to talk to you or not of if they want help or advice or not. * Be sensitive to their wishes. * Issues of confidentiality. The volunteer must always keep the patient's name, address, family and medical details to themselves unless they obtain permission from the patient to share it in confidence with the trainer or supervisor or church elder or priest. Confidentiality is paramount, so the patient can build a trusting, valuable relationship with the volunteer visitor. Reassurance that no gossiping will take place of anything the volunteer sees or hears. * Patience. It takes time to build up a rapport with someone new. You may need to get to know the guardians too. Try to spend quality time with the sick person and their family on a regular basis. At least 20-30 minutes each visit (if they are able to tolerate that length of time) Ideally 50-60 minutes is the optimal time for weekly visits to be of any real benefit. * Express warmth; be sincere, genuine and as honest as possible. If you are anxious or nervous on the first visit - say so. Introduce yourself. Shake hands and sit near the person, get comfortable, look at them. Eye contact shows interest, if this is culturally acceptable. (Accept a drink if offered.) Show you are interested by listening carefully to what they have to say. * Encourage them to talk about themselves and their family, their interests, hobbies, what job they did or their health. Ask how their illness has affected their life. It is not appropriate to talk about yourself (just a few details). * Do not judge them or blame them for their illness. * Try to put yourself in the sick person's shoes. How might you feel if you had HIV/AIDS? You may want to discuss this in the training session. * Encourage expression of feeling. This can really be therapeutic for the sick person. Don't be embarrassed if the person cries, gets angry or distressed. If the person is depressed, try to hang on in there, whatever feelings are shown. You may be the first genuine, caring visitor who really tries to understand who the sick person feels about their illness. Try not to offer inappropriate reassurance or hope for full recovery. Miracles are rare and they probably won't get better. * Be reliable and consistent. If you promise to visit be on time. * You can offer hope in the form of regular continuing visits giving emotional, spiritual, physical and social support to the patient and family. II. Use of Counselling Skills by Volunteers. (God gave us two ears and one mouth) * Listening Skills You are visiting to provide support. Try to hear the patient's story and identify main areas of concern or worry. (You may not be able to solve or fix their problems for them) * Really listen to what they are saying to you. What worries, concerns or fears do they have? * Help them to express these fears. To have someone willing to listen and try to understand and accept the situations and emotions expressed and bring great relief and healing. * Providing support reduces their isolation. They may feel able to share previously secret information with you or tell you something that has embarrassed them if you allow them space to talk. * Sometimes you can offer advice if specifically asked for your opinion in certain situations. Generally its not good to give advice to someone else because we don't know what's right for them only what's right for ourselves. Do not tell the patient what to do. Only they can make the right decision. * Encourage as healthy a lifestyle for the patient as possible. To wash regularly; care for their appearance; rest frequently; sleep well; eat small nutritional meals if possible; take frequent sips of drink; can they walk short distances? Write letters for them; read to them; * What resources to the sick person and his family have? Can you see real financial hardship? Is there evidence of food in the house? Who is the guardian? Are there dependent children in the household? III. First Part of the Relationship. * Introduce yourself. Shake hands. Ask what name you should call them by. * Remember you are trying to get to know them so concentrate on them. Listen well. Sit within a comfortable distance. Try to look relaxed. Smile. Put them at ease. * Look directly at the person (unless culturally unacceptable). Murmuring encouragement: 'I see', 'Yes, go on'. Don't be put off by silences, they may be waiting to see if you jump in with things you want to talk about. Let them choose what topics to talk about. * Some non-verbal signs are not helpful such as: looking at watch; looking away; yawing. Don't speak too fast or abruptly; try to make your voice sound kind and encouraging. * Let the person know you are really listening by reflecting back to them, 'You are saying you're worried about the children'. * Ask open question to help the person to talk. 'What did you think?' 'What happened next'? Some questions bring out emotions; 'how did you feel when they told you about your condition?' * Open questions are ones which cannot be answered with a 'yes' or 'no' so the person has to say more and this encourages them to talk further. * Don't be afraid of humour. It can reduce tension. * Too much sympathy is not helpful. On the other hand empathy is a real understanding of how the other person is feeling. * Don't underestimate the value of encouraging a sick person to express or ventilate their feelings. * A relationship needs to be built over time so trust can develop and hidden issues may be revealed. Encourage positive attitudes, changes in behaviour if appropriate and mobilizing any available resource or other agency that may help with a specific problem. * The relationship can last for years or only be for a short time. When it is to end, try to prepare the patient. Don't just stop visiting without an explanation. If the patient dies try to attend the funeral and find someone who you can talk to about it. * Don't advise or tell the person what to do. Let them make their own decisions. * Don't allocate blame or judge them, just accept them the way they are. * Don't be too direct or ask 'Why' questions, ('Why did you do that?') can sound too threatening and judgmental (and disapproving). * Don't preach just because you think they are a captive audience. You could offer to pray or offer spiritual support but only where it is welcomed by the patient and you are comfortable doing so. * People can be influence by your role model of kind consideration and caring and then ask you why you are a church volunteer. Sometimes they may wish to talk to a pastor or some else who can offer spiritual support. * Leave the patient with a positive attitude. Tell them you will visit again if they wish. Knowing you are interested in their welfare gives them incentive to go on living life to the full or end. You may help them resolve some of their problems. The reliable volunteer will make an important difference in the life of the sick person. IV. Holistic Care It is important to care for the whole person. Holistic Care is an approach which treats the whole person, not just physical symptoms. 1. Socially - consider their family and community or village life. What was their job? 2. Emotionally - are they angry, depressed, distressed, suicidal? 3. Physically - are they in pain; have an AIDS related illness; cancer; deformity; stroke problems; eating disorder (weight loss). How do they look? 4. Psychologically - what is their personality like? Are they shy? Outgoing? 5. Spiritually -are they Christians? Do they believe in life after death? What do they think of God? To they want to talk to a pastor? All these parts make up the whole person. The attitude that you care about all these aspects of the sick person can be conveyed in a very short time. There may be barriers between the patient and the HBC volunteer. For example, some man may have difficulty forming a trusting, confidential relationship with a woman. Some female patients may find it difficult to talk about body functions or certain illnesses with a male visitor. Some topics in Malawian culture may be taboo, not spoken, except in certain special private situations. Many Malawians find it not socially acceptable to talk about sex, death, or their HIV status. As these are really important issues that worry and frighten sick people and their families it is vital that you listen with sensitivity and courage. Don't be afraid to tell the person that you can keep some things private and confidential. Patients may have very few choices about events in their life, e.g. their illness, family problems, living conditions, etc. Help find small choices they can have control over. 'Where would you like me to sit?' 'Would you like me to help you wash; eat; make a drink' 'Would you like me to read to you, or just sit beside you?' The patient may wish to change aspects of their ways of thinking or their behaviour. Help the sick person discover realistic alternatives. II. Session Two - Infection Control People have been caring for one another and helping the sick since the beginning of time. However, there are times when people have also been hurting each other unintentionally because of ignorance or misinformation. With this class today, we are hoping to provide information and guidance which will enable you to provide compassionate care to those we are seeking to help without causing potential for risk of infection of injury to either the person you are seeking to help, or to yourselves. Our goal is to reach out and help people in their time of need. In order to do that effectively, it is important that we know some basic facts, which will allow us to 'do no harm'. (Hippocratic Oath) Hypocrites (late 5th century B.C.) called the 'Father of Medicine.' By stressing that there was a natural cause for disease he did much to dissociate the care of the sick from the influence of magic and superstition. A moral code for medicine has been established by his ideals of ethical conduct and practice as embodied in the Oath. (Miller 1972:437) Although Hypocrites did not know God as we do, he none-the-less had some good ideas about medicine that are still in practice today, over 2500 years later. Even today, physicians will recite the oath as part of their training to become a doctor. We can learn from it as well. '...I will prescribe regime for the good of my patients according to my ability and my judgment and never do harm to anyone. . . . All that may come to my knowledge in the exercise of my profession or outside my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.' Let's look at some of the components of this oath that will apply to what we will be doing. '...I will prescribe regime for the good of my patients . . . In many ways, you will be overseeing the care of patients and it will be the observations you make and the suggestions that you give which will determine the kind of care which the patient receives. . . patients according to my ability and my judgment . . . It is important to remember our abilities and skills, as well as our limitations. While you are receiving training to equip you to give good, compassionate care to those who are sick and in need, it must always be remembered that we are not doctors, and in such, we have no ability or authority to make medical determinations which should be left to medical professionals. No matter how great or small your knowledge and skills are, you can do a good job as long as you know and work within your limits. This means: Do what you know how to do. Do not try things you have not learned about or have not had enough experience doing, if they might harm or endanger someone. With this thought in mind, we can move forward to use the knowledge and wisdom we have to make determinations which are in the best interest of our patients. . . .and never do harm to anyone. . . By learning general principles of patient care, you will be able to help people without fear of injury to either yourself or the patient. Germs (and other nasty things), the Building Blocks of Disease God made man as a most fascinating creation. We are so strong and clever that we can create and appreciate beautiful things like art and music. We can develop our minds by learning an endless supply of new and interesting things. We can strengthen and build up our bodies so we can defeat our enemies. But even with these abilities, we must face the fact that often the enemy we face is unseen, being so tiny that we cannot see it with our naked eyes. There are many micro organisms that are so tiny that they were unknown until recently. In fact, the HIV/AIDS virus is so small that it cannot even be seen with an ordinary microscope. It is hard to imagine that something so tiny could be so powerful at the same time, yet it is these very tiny germs and viruses that can bring destruction and devastation into our lives. Unfortunately, the very tools that we bring with us to help people are also the very tools which spread germs and disease. What do you think is the number one cause of spreading infection? (Lippencott 1986:857) Picture of hand with germs Share the story of the doctor that discovered hand washing, and how he was 'blackballed' because his peers refused to consider such an idea. What are some ways that we can prevent the transmission of germs when we visit people who are sick? This should generate a discussion that will ultimately end in the idea of the caregiver washing his/her hands upon entering the house and before they exit. Is it reasonable that we visit people and try not to 'touch' them? Discuss the importance of human touch. Many people, especially sick people haven't been touched for a long time. Share the story of orphan babies who died without touch. What are some ways that we can help the patients and families who are caring for them to reduce the transmission of germs? Let the people brainstorm to come up with ideas to prevent the transmission of germs and disease. HIV/AIDS Christian Leaders in Africa cannot turn a blind eye to the HIV/AIDS pandemic, it is devastating Malawi along with the rest of Africa. IN MALAWI * 57% of girls feel it is easier to risk pregnancy than ask their partner to use a condom * 70% of female sex workers in Lilongwe tested HIV-positive * 31% of girls do not know that a person infected with HIV or living with AIDS may look healthy * 90% of teenage boys feel invulnerable to HIV12 * HIV (seroprevalence) among antenatal women in urban areas of Lilongwe, Blantyre and Mzuzu increased from 2 percent to 30 percent since the mid 80s. Peak HIV prevalence of 32% was seen among women aged 25-29 years of age. * Outside of major urban areas, HIV was 14% of women under 20 years old and 28% of women in the 25-29 year old group. Based on statistical estimates, every day in Malawi: * 1,640 children are born * 209 infants (under one year) die of preventable diseases * 344 children under five die * b Sources: THRESHOLD 21 simulations and World Bank STARS data, table found: UNDP's 'UNDAF - Malawi', October 1998 What are you, as Christian Leaders going to do to save your country? Not getting AIDS yourself is commendable, but it is not enough. HIV/AIDS background: * It was not heard of in the 70's. * It was beginning to be noticed in the 80's but they didn't know just what it was. * The HIV/AIDS in Africa is a very different disease than in the West What is HIV/AIDS? AIDS is the name of a disease (Acquired Immune Deficiency Syndrome), which is characterized by the body loosing its ability to fight infection. AIDS is caused by the human immunodeficiency virus (HIV), which is a small virus with little proteins on the outside. The virus takes over the lymphocytes (a type of white blood cell), and destroys them, which decreases the body's ability to produce antibodies against infections. It effectively 'hides' inside a cell, so that it cannot be recognized by the immune response cells. HIV infects the major subset of 'T' cells, the T4 cells in particular The RNA attaches on the proteins of the helper T cells, CD4 (normal level is 500-1000) is one type of 'T' cell that helps the body recognize foreign substances, goes inside the cells to destroy and slow down their processes. * Initially, after exposure to HIV, the CD4 level drops and S/S of 'flu' (swollen lymph nodes, fevers, rash, etc.) develop. * The immune system quickly responds and the CD4 levels rise and S/S go away. * The HIV 'hides' so the immune system can't see it and the immune system slowly declines. * Once the CD4 level drops to 200, opportunistic infections begin. * At a CD4 level of 50, the body can no longer defend itself. A 'window period' is when a person can be infected with HIV and not test positive on a screening test. 90% will test positive after one month, 98% after 3 months and 100% after 6 months. (Some people refer to the period of time a person is asymptomatic with AIDS S/S as the window period.) Technically, it is true that people don't 'die of AIDS', because they die for some other 'opportunistic' disease. How is it spread? Means of transmission: * Transmission to another person must require transmission of body substances containing infected cells. * Blood or plasma (e.g. transfusions and using contaminated needles for injections) * Plasma containing fluids (such as saliva) * Any fluid or exudates that contains lymphocytes: * Semen * Tears * Vaginal secretions * Transmission is easier if tissues are inflamed or traumatized Effects of AIDS * Many people infected by the HIV virus, will have no symptoms for many years (they are called asymptomatic carriers) * Symptoms of AIDS may appear 6 months to 6 years after infection took place * Lung- lung infections (such as pneumonia or TB) * Skin - cancer (Kaposi' s sarcoma), that can also affect the internal organs * Nervous system - mental disturbances, vision problems, blindness, weakness, paralysis * Digestive system -~ diarrhoea Some signs and symptoms of AIDS * Fatigue lasting for weeks * Swollen lymph nodes * Decrease in weight * Fever and night sweats * Shortness of breath * Persistent, dry cough * Diarrhoea for more than a week * Pink or purple patches on the skin * Lethargy and depression **So far, no cure for AIDS has been found** Statistics: * Worldwide incidence is 37 million (infected) * Sub Sahara Africa has 27 million infected, only 10% of worlds population has 2/3 of all HIV Malawi - conservative estimates say 14-16% * Possible 30-50% in Blantyre and Lilongwe * 60% of the cases are in Women * 70 - 80% of those in the hospital * Currently there are 400,000 orphans in Malawi * Projected figure of 750,000 by 2010 * The Malawi government is currently budgeting $0.65 per person per year for AIDS treatment. * The young adults are dying and they are the ones that drive the economy. Who Gets AIDS? Three groups of people get AIDS 1. Infected babies MTCT (mother to child transmission) The baby has 30% chance of getting AIDS if mother has AIDS soon there will be free medicine available in Malawi which can reduce the risk of transmission to around 10% * 60% get it during the birth process * 10% get before birth through the placenta * 30% get it through breast-feeding 2. Those who are sexually active * Most people develop S/S 2-10 or 12 years after exposure. Rapidity of symptoms depends upon the individual's immune system. * Most are infected by sexual contact. HIV is present in blood, semen, and vaginal secretions. * It is more contagious for women then for men because of the delicate vaginal lining. 3. From Blood transfusions * Although the percentage from blood transfusions is very small in comparison to the other methods, it should also be considered as a mode of transmission. Treatment: Old focus was on developing a cure. Now focus in on: 1. Prevention and 2. Suppression Currently there is very little treatment available in Africa for those suffering from HIV/AIDS. Prevention: Two groups - 1. Birth and over 15 years old * MTCT * medicating the mothers before and during delivery against HIV and no breastfeeding can reduce rates to 10-12% * cost of medicine is $1000 per month 2. Sexually Active Population (15 and over) a. Abstinence b. Both partners practicing monogamy after marriage c. Education - let's tell the truth * Condoms have a pregnancy rate of 10-15% and sperms are much larger than HIV * Comparing the size of a sperm to the HIV virus is like comparing a basketball with a maize seed. * Another consideration: If the pregnancy rate is 10-15% with a condom, you must also factor in the fact that a woman is only fertile one week out of 4! HIV/AIDS can be caught at any time! It is not caught by: Casual contact, even close but non-sexual contact III. Session Three - Basic Comfort Measures Sometimes it is difficult to communicate with others how we feel. Words don't always express physical or emotional status accurately. Sometimes it is easier to identify with one of these faces, than to try and put feelings and sensations into words. Sometimes it is the simple things that can make all the difference in how someone feels: * Smile - look pleased to see them * Say that you will return if they wish for you to. * Take an interest in things that are meaningful to the patient (pictures on the wall, their family, etc.) * Encourage them to talk about their life. * If patient is in pain or discomfort, try diversional methods to distract them if possible. Can they still write, paint, read, draw, knit, sew, carve.. etc. * Encourage patients to continue to participate in family life. (preparing vegetables, helping children with schoolwork or just listening to what your children are saying) * Read the Bible or books to them, sing with them. * Offer to wash their hands, face, etc. to help refresh them. * If they have a fever or are hot, put a cool, wet cloth on their head/forehead/neck, etc. * Bathe sticky eyes if troublesome. * Encourage patient to wear loose clothing. * Some people have a special cloth or blanket that brings them comfort. * If appropriate culturally, offer to cut nails, apply skin cream, etc. This can be very relaxing. Same with feet, if the volunteer feels able to wash someone's feet, stroke neck, hands, massage feet, etc. * Encourage the family to provide a comfortable seat/bed for the patient near a window for light and fresh air. Fatigue Energy conserving measures can make a considerable difference: * Try to feel relaxed and unhurried and the patient will too. * Suggest frequent rests, sleep, and sit with feet elevated. * Encourage patients to pace themselves not to overdo things. This will help them to reserve their energy for the things they enjoy doing. * Help by supporting weak patients to just walk around room/garden/village. Sore Mouth Anything that makes eating or swallowing difficult is worth treating as much for the sake of relatives, who feel that feeding the patient is a way of showing they care. Management: Generally keep mouth fresh by rinsing with a saline solution made up of a pinch of rock salt in a mug of water. (Solution should only be mildly salty - like tears) Foods are usually preferred either icy cold or very hot. Semi solids are preferred to either fluids or solids. Thrush: small white patches on the inside of the mouth and tongue that look like milk curds stuck to raw meant. They are caused by a fungus or yeast infection called moniliasis. Thrush is common in newborn babies, in persons with AIDS, and in persons using certain antibiotics. Paint inside of mouth with gentian violet (Vanderkoo 1994:C-20) (often comes as dark blue crystals. Dissolve a teaspoon of gentian violet in half a litre of water. This makes a 2% solution. Paint it on the skin or in the mouth.) Chewing garlic or eating yoghurt may also help. In severe cases, use nystatin. Put 1 ml. of solution in the mouth and hold it there for at least 1 minute before swallowing. Do this 4 or 5 times daily. Ulcers (canker sores): small, white, painful spots inside the lip or mouth. May appear after fever or stress (worry). In 1-3 weeks they go away. Gargle with saline solution mentioned above. Antibiotics do not help. Cold Sores and Fever Blisters: Small painful blisters on lips that break and form scabs. May appear after fever or stress. Caused by a herpes virus. They heal after 1-2 weeks. Holding ice on the sores for 1 hour the day they begin may cure them. There are no medications that do much good. Will need medical intervention if severe. Halitosis 56%-85% of cases are due to disease of the oral cavity. Causes: * Sepsis * Toxic Condition * Smoking and dehydration * Poor oral hygiene Treatment: * General: * Oral hygiene * Fluid intake * Treatment of candida (thrush) * Gargle or mouthwash (artificial Saliva - made of salt and water) may help with a dry mouth. * Vaseline can prevent dry lips. * Mouth care every 2 hours. * Sucking of favourite 'sharp' food or sweet (pineapple, passion fruit, orange or lemon) Diarrhoea/ Constipation: Incidence: Around 50% of terminally ill patients suffer with constipation. Causes: * Medication * Disease * Diet * Decreased activity * Stress Assessment: * Attempt to establish cause * Establish previous and present bowel pattern (aim for usual pattern) * Assess skin condition Management: * Advise increased fluid intake (Oral rehydration solution for those suffering with diarrhoea) Oral Rehydration Solution can be homemade using 1 litre of clean water mixed with 9 level teaspoons of sugar and 2 level teaspoons of salt. At least a cupful (preferably more) should be taken after each episode of diarrhoea. This solution should be discarded after 24 hours if not used. * Skin care and personal hygiene to prevent irritations to skin. * Advise on increase in fibre in diet, and increase in fluid intake * Privacy and adequate toilet facilities. Nausea and Vomiting and Failure to Eat Causes Possible Treatment Fear of vomiting Psychological Support Unappetizing or too much food Allow to choose Feels full Frequent small meals Dehydration Rehydrate earlier, if appropriate Mouth discomfort Keep moist, chew saliva stimulant Pain Treat Anxiety/Depression Counselling Constipation Treat according to condition Trouble swallowing Soft or pounded foods Support Relatives: Explain that the terminally ill patient may not feel able to eat or be unable to eat. Relatives sometimes need to see the patients eat and may well need support when the patient is unable to eat. Patients generally eat better when dressed and sitting at a table, if they are able to do this. Incidence: 40%-70% of patients with advanced cancer suffer with this. Causes: * Oral thrush * Uninteresting, unimaginative food * Too large helpings, or food offered only at standard meal times * Odours in environment * Disease process, medications Management: * Encourage small sips of water or juice. * Offer mild foods like bread, rice, crackers, bananas * Try to remove the offending cause * Remember that patients can eat more sitting up with the family or sitting beside the bed * Avoid strong odours that may cause nausea. * Do not pressure the patient to eat. Tempt the patient with minute helpings of favourite foods on the smallest plate available. * Offer attractively served food at frequent intervals unrelated to standard meal times. * Be reluctant to offer 'invalid' food no matter how nutritious, but be ever ready to permit and encourage any bizarre fancy the patient may have, even if it is not considered suitable for an invalid, (cassava crisps, matoke at breakfast, coke). * Treat cause if possible (constipation, etc.) * Psychological Support (especially if anxiety related or anticipatory. Relaxation techniques can be beneficial) * Dietary modification (increase fluid intake if appropriate and if possible, advise small regular meals, low odour food) * May need medical intervention * If they are experiencing problems taking tablets, they can be crushed into powder by grinding them between two spoons. Give plenty of water. If there are many tablets to take, try spreading out the times of taking them (give one each hour instead of six at once) * Even if patient vomits, the taste of food can give a feeling of well-being. A tiny amount of a food he fancies might be good, even if it is spit out and now swallowed. * If patient is too ill to drink, moisten lips with water or Vaseline. * Patients can gargle with salt water (saline solution) or bicarbonate of soda, if having a sore throat. If severe, give Promethazine 25 mg every 6 hours Refer to HCP if * Vomiting is severe * Patient is unable to take medicines because of vomiting * Fever or abdominal pain Wakeful Nights: * Increase daytime activity * Reduce light and noise (although patient may like a small night light) * Comfortable bed * Hot drink (lemon grass tea - avoid tea or coffee with caffeine) * Soothing music according to patient's choice * Discuss fears and anxieties * Presence of familiar / trusted person at night-time Confusion (in previously unconfused) Causes: * Unfamiliar stimuli (temperature, wet bed, crumbs, full bladder or constipation, pain, itch) * Change of environment * Severe anxiety * Depression * Alcohol * Disease process or medications (medical intervention necessary) Management: * Relatives -stress that the patient is not going mad - explain the reason, especially that it is not hereditary. * Treat the patient as a sane, sensible adult * Do not use restraints and avoid cot sides * Allow to walk about accompanied by a trusted friend * Dispel patient fears - night-light * Explain all procedures and events * Do not change bed position, particularly in hospital * Family member or close friend near by at night * Do not change environment Depression This is often under diagnosed in the terminal patient, one third may need treatment. If it is not treated it can lead to suicide. Most depression is reactive: * To dying (leaving everyone and everything) * To unrelieved pain * To unrelieved symptoms Reactive depression is normal in terminal illness and needs support and counselling only. Pathological Depression Symptoms: May need medical intervention * Withdrawal * Agitation Symptoms: * Disturbed sleep pattern (especially early morning wakening) * Impaired concentration * Feel guilty and burden to others * Altered eating patterns * Lack of pleasure in the things a patient usually enjoys * Occasionally persistent thoughts of suicide (different than normal thoughts of dying in the dying patient Treatment: * Speak softly with world of encouragement. (do not offer unrealistic hope) * Read to the patient, especially Scriptures * Ask the patient if they would like to speak to a minister, or if they would like to talk about spiritual matters. * If appropriate, ask them if you can write a letter for them or prepare letters to leave behind if they are aware that they are dying. If severe, refer to HCP Breathing Difficulties Cough: Assess cough: Is it productive? Dry? If patient has a cough, ensure they know to put hand in front of mouth and if expectorating sputum, make certain that there is a pot close by to spit in. Cough Management: Productive: * Encourage patient to drink fluids * Encourage deep breathing * Gentle postural drainage * Steam inhalations if thick sputum * Green or bloody sputum requires medical intervention * Short of breath: * If patient has breathing difficulties, encourage the use of a fan, if no fan, ensure there is a through draft or current of air moving between window and a door. * Show patient how to breathe easier by leaning forward on elbows resting on a high table or chair in front of them (to expand the ribcage). * They will probably be more comfortable propped up on pillows or cushions or in a semi-sitting position, rather than lying down. Refer to HCP if patient has any of the following: * Cough lasting over 3 weeks * Fever * Shortness of breath or rapid breathing * Have patient cough sputum into a plastic bag or container with a lid. * Cover mouth when coughing * If patient has TB, encourage them to take their medicines as directed Skin problems Itching Management: * Emulsifying ointments * Sodium bicarbonate washes as often as desired by the patient (one tablespoon of powder in the smallest volume of water sufficient to dissolve it). Patients often report this as more effective than any other measure. * Cold fan playing on the exposed skin * Sitz bathe with salt (saline) water solution to bathe irritated areas. (Saline solution = one teaspoon salt to one litre of clean water) * Calamine lotion * Antihistamines (chloropheneramine) For painful rashes (shingles) * Paracetamol 500mg 1-2 every 4 hours Or * Ibuprofen 200mg 2 every 6 hours (Do NOT give to patients with stomach pain or ulcers) Tip for Acute Herpes Zoster: * Liquid from frangi pani tree, when applied to the vesicles cause paralysis of nerves for up to 8 hours. Break off a small branch and collect the white fluid into a clean jar. Paint this onto the area. * Fluid can be kept for up to 24 hours. Then renew from the tree. Refer to HCP if patient has: * Severe rash * Fever * If patient has painful rash on face and has redness or pain on the eye or blurred vision. Excessive Sweating This distresses patients because of the inevitable discomfort and embarrassment. Management: Try to treat the cause Most patients are assisted more by frequent sponging and appropriate advice about clothing and bedding than by medical measures (loose cotton clothes, etc.). Pain or Headache If the patient complains of pain, ask: * Where does it hurt (Ask them to point to the exact place with one finger) * Does it hurt all the time, or off and on? * What is the pain like? (sharp? Dull? Burning?) * Can you sleep with the pain? Management: * Paracetamol: Often comes in 500 mg. tablets. Give 1-2 tablets every 4 hours Paracetamol is safer for children than aspirin. It does not cause stomach irritation and so can be used instead of aspirin by persons with stomach ulcers. It can also be used by pregnant women. * Gentle massaging of the limb may be helpful. * Refer to HCP if: * Headache is severe * Patient has severe headache with a high fever and stiff neck Wounds or Bed Sores Chronic open sores appear in persons who are so ill they cannot roll over in bed, especially in sick old persons who are very thin and weak. The sores from over bony parts of the body where the skin is pressed against the bedding. They are most often seen on the buttocks, back, elbows, or feet. Prevention is the BEST medicine! * Turn the sick person over every hour or two: face up, face down, from side to side * Bathe him every day and rub his skin with baby oil. * Use soft bed sheets and padding. Change them daily and each time the bedding gets dirty with urine, stool, vomit, etc. * Put cushions under the person in such a way that the bony parts rub less. * Feed the sick person as well as possible. If he does not eat well, extra vitamins may help. Treatment: * Clean regularly with soap and clean water * Protect from dirt, stool and urine Refer to HCP if * wound is dirty or smells bad * the edges of wound are red or swollen * patient has a fever Fever When a person's body temperature is too hot, we say he has a fever. Fever itself is not a sickness, but a sign of many different sicknesses. Treatment: * Uncover them completely (do not bundle them up in blankets, even if they feel 'cold') * Give Paracetamol (Panadol) 500 mg 1-2 tablets every 4 hours Or * Aspirin 1 tablet every four hours (Do NOT give to children or patients with stomach pain or ulcers) * Anyone with fever should drink lots of water, juices or other liquids. If fever is severe or has lasted more than 24 hours, refer patient to HCP. Consider treating for malaria if patient cannot get to a clinic soon. IV. Session Four - Sharing the Good News of Jesus Christ As Christians, we want to demonstrate the love of Jesus Christ in our lives. On way of doing this, is to reach out to those who are sick and in need with hands of compassion as you are doing in the home based care program at your church. In the Bible, there are many Scriptures that support the idea of doing more than just speaking with our mouth when we want to help people. Christianity is a 'hands on' life! We want to demonstrate our faith, by putting it in action and physically reaching out to those who are in need, but at the same time, we don't want to neglect the opportunity to share with them the hope and good news of Jesus Christ. Sometimes, it is easier to 'do' than to share, but it is essential that we do both! When it comes to sharing our faith, we must remember some of these basic principles: * People often cannot 'hear' our words when they are suffering or in pain. We must do all we can to relieve their suffering and provide comfort. * If they are frightened or anxious, they will not absorb new information. In these times, our loving actions will speak much more than our words. * A trust relationship must be developed, so our words will have credibility. W * Although we will care for everyone in the 'name of Christ', we must take great care to prevent the perception that the care we provide is dependant upon their 'receiving Christ'. * God does not need to be 'pounded in' to anyone. If a person is given a clear picture of the Gospel, it is up to God whether or not they receive Christ. We are not responsible for the outcome of their 'decision'. We are only responsible for making sure they have been told the way. Remember the saying, 'A man convinced against his will, is of the same opinion still!' On the other hand, it is essential that we look for opportunities to share Jesus with those we are ministering to. In many ways, reaching out to people when they are sick and in need opens doors that would have been closed otherwise. People who are sick and needy are more open to the Gospel. When faced with your own mortality, you begin to think about where you will spend eternity and discover an increased interest in spiritual things. Young people especially, but people in general, tend to not like to think about death and the afterlife. Instead, we tend to think that death and sickness happen to 'other people' or that it is going to happen so far away in the future, that it is nothing to concern ourselves with at present. When we are faced with a threat to our health, or the health of those we love and care about, or that we see as 'peers', we often become more reflective and think about eternal things. It has been proven that people, during a time of change, even a good change, are more open to spiritual things. Who needs to hear? Most people, if asked, would call themselves 'Christian', unless they already identified with another group such as Islam, or followed the ATR exclusively. But many who fall under this 'banner' really have no idea of what being a Christian really is. Sometimes it is helpful to ask EE's two diagnostic questions, to help clarify what a person is putting their trust in. 1. Do you know for certain that you will go to heaven when you die? 2. If you did die tonight, and found yourself standing before God, and he were to ask you, 'Why should I let you into MY heaven?' What would you say? These two questions help to determine what people are putting their trust in. Many people are trusting in the good things they do to be their ticket into heaven. There was a story of a man who wanted to go to a football game. It was going to be an exciting game and he really wanted to go. The problem was, he didn't have a ticket. As he was digging down into his pocket to find money to buy the ticket, an idea struck him - maybe he didn't have to have a ticket! Was there another way to get it? As he thought about it, it occurred to him that everyone at the game would be cheering and yelling support for their team. This would make them thirsty. In addition to that, the sun would be beating down on them and they would all be hot and thirsty. As he thought about it, he realized that if he would provide cool, refreshing drinks to everyone there, it would be a real blessing to the people. Surely if he were providing such a wonderful service, they would let him into the game without a ticket! He set to work preparing for the game. He bought huge containers and filled them with a special drink that he had created just to quench thirst. He worked long and hard to make all the preparations. When finished, he looked over his work and made a mental checklist in his mind: * Drinks, * Ice * Cups * Trash container He looked his list over and decided that he had indeed thought of everything. He was excited as he anticipated how happy everyone would be with his magnificent plan to refresh them during the game. Finally the big day arrived. He loaded all of his equipment on a special trailer that he had designed just for this purpose and headed to the game. When he got to the gate, the gatekeeper asked him, 'Ticket please' he replied, 'I don't have a ticket, but it is okay because I have brought refreshing, cool drinks for everyone' The gatekeeper said, 'That is very thoughtful of you, but in order to get into the game, you must have a ticket' Don't you understand, the man said, I have spent a lot more time and money on the preparations I made to give drinks out than it would have cost me to buy 10 tickets! 'I'm sorry', said the gatekeeper, but in order to get into this game, you have to have a ticket. That is the only way I am going to let you in. After much protesting, the man was so disappointed as he realized that it didn't matter what he had done, what mattered in the end was whether or not he had a ticket. The owner of the stadium set the rule, and there were no exceptions. Even with all of his preparations, he could not go to the game and he missed it all. It is very much the same in our lives. Many people think that they can make the rules on how to get to God. They think that if they are 'good' enough, or if they don't hurt anybody, or if they go to church, or if they help the poor and needy...etc. They have this idea that there is something that they can do which will please God enough so that He will let them into His heaven when the time comes that they stand before Him in judgment. The reality is, they will be sadly disappointed, just like the man in the story, because there is only one way to get into heaven. All of our efforts and hard work are meaningless to God if we don't have the one thing (the ticket) that He requires. After all, it is His heaven, and He gets to make the rules on how to get in. God is love and even in your sickness God still loves you. John 3:16 For God so loved the world, that He gave His only begotten Son, that whosoever believes in Him, will not perish, but have everlasting life. This verse explains God's love for the world and the world is you and me. This means God loves us. We destroy this love with our sinful state. Sin is any disobedience towards God. Man is a sinner. He chooses either to obey or to disobey God. The Bible, in Romans 3:23 says: 'All have sinned and fall short of the glory of God.' This means everyone - no exceptions. Whether one is ill, just as you are, or not. Because of sin, man is now separated from God. Romans 6:23 says: 'For the wages of sin is death. This death does not mean physical death but spiritual separation from God. Example of separation between God and man. God is holy while man is sinful. (Bridge illustration) There is separation between us and God. Sin separates us from God. People try to reach God with their own efforts, but any efforts can fail. But Jesus came to save us. He is the only way to God. The Bible says in John 14:6; 'Jesus said to him, 'I am the way, and the truth, and the life; no one comes to the father but by me.' Here are three circles to represent your life. Which circle represents your life? Which circle would you like to represent your life? The separation between God and man was filled by Jesus (Bridge illustration) Only Jesus can fill this separation. 'Jesus said to them, I am the way, the truth and the life, no one comes to the Father but by me.' John 14:6 Jesus died on the cross. 1 Peter 3:18 says 'For Christ also died for the sins once for all, the righteous for the unrighteous, that He might bring us to God' since the wages of sin is death, Jesus died in our place as a gift. He gave his life for us. As a gift, Jesus needs to be received in our heart. We must receive Jesus as Saviour and Lord. Then we can experience God's love in our lives. The Bible promises us the honour and privilege of becoming children of God. When we become children, God becomes our father. John 1:12 says, 'But to all who received Him, who believed in His name, He gave power to become children of God.' When you hear the worlds of the Bible as I am telling you take it that Jesus is knocking at the door of your heart. He wants to come in once you open. Revelation 3:20 says; 'Behold, I stand at the door and knock. If anyone hears my voice and opens the door, I will come in to him.' You receive Jesus by faith, by inviting him into your life. Receiving Christ means turning to God from self (this is what repenting is). We trust Christ to come into our life and to forgive us our sins. But the good news is that you can receive Christ right now. You ask him to come in your life through prayer. Prayer is asking or talking to God. Model prayer: Lord Jesus, I realize I am a sinner. I have been controlling my life. I now ask you to come into my life. Forgive my sins. May you rule my life. In Jesus' name, Amen. Assurance of salvation: If you prayed that prayer believe that Christ has come into your life. He promises He will. In Rev. 3:20 Christ promised He will come into our lives. The Bible promises eternal life to all who receive Christ. 1 John 5:11, 13. God is more interested in what you mean in your heart than what you say or feel. When you receive Christ many things happened to you: * Your sins were forgiven * You became a child of God As a leader, pray to thank God for opportunity of growth. Faith in God has to grow and you grow by: Going to God in prayer daily Reading God's work daily Obeying God moment by moment Witnessing for Christ by your life and words Trusting God for every detail of your life Having God control and empower your daily life and witness Having fellowship with other believers in the church. It is important that we remember we are 'sharing the good news', not pounding them over the head! No one likes to be preached to, but everyone wants to hear really good news. We have not failed if they do not become a Christian, that is up to God, not us! We are like 'one beggar, showing another beggar, where to find bread.' Regardless of their response, the most important thing we can do is demonstrate Christ's love to them in a real way that they can see, feel and absorb. That will be more of a witness than any words coming from our mouth. But it is important that we do share and not just demonstrate. If we never tell them that we are caring for them because of the love of Christ, then the blessing of our visit will be to our own glory and not to God - we don't want to be guilty of stealing God's glory! Another thing to consider has to do with our thoughts about God. Sometimes when we are sick, or when the circumstances in our life are very difficult, we have questions deep down in side of us that wonder just where God is in this situation. There was a time when someone I knows mother was sick and dying. The woman was not old, yet she was dying of an incurable illness. My friend was a Christian, and although she knew that God was in control of the situation, she still questioned God. 'How could He do this?' she wondered. 'If He was so powerful, how could He let this happen?' It didn't seem at all fair to my friend and she began to feel angry at God for allowing this terrible thing to happen to someone she loved. Then, she began to feel guilty for being angry at God, after all, as a Christian, how could she be mad at God? Although we will never have all the answers, it is important that we allow people to verbalize their feelings. How could we help someone struggling with the problem my friend had? * Should we preach at her about how God can do whatever He pleases and we have no right to complain? * Should we sit silently beside her, offering silent comfort and prayers? * Should we attempt to console her with words like, 'it will be all right'? What should we do? It is not at all unusual for even committed Christians to suffer with such turmoil during times of crisis. Many times when we are visiting the sick our mission is not to bring the good news of salvation, but to comfort the grieving who are suffering with torments in their spirit. Telling someone that they shouldn't be angry, or that 'it will be all right' are meaningless platitudes that help nothing and in fact, tend to discredit you as a caregiver. It may be helpful to remember that even King David, who was the 'apple of God's eye' had many doubting questions toward God when he was suffering great turmoil. That is what makes up many of the Psalms. We must remember that God knows and feels our sorrows and grief. He understands how we feel. Many of you have suffered with the loss of a loved one and you know how difficult that can be. You are an example of 2 Corinthians 1:3-4, 'Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.' Sometimes the best thing to do is to sit quietly by someone's side as a quiet testimony of our concern for them. It is our human nature that we want to 'fix' the problem. We want to say or do something to make it 'all better'. But it is more important to allow someone to grieve without our judgment coming to bear on them. It might be that our words would be best kept for another visit, when they are ready to hear them. We must always be sensitive to the needs of those we are trying to minister to. Pray for God to give you wisdom and insights as to what would be the best way to minister to each person. He tells us in His word that, 'If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault,, and it will be given to him.' James 1:5 Sometimes there are thought within us that conflict and confuse us. Often things we know and believe now, conflict with concepts and traditions we learned as a child. When we are sick, or threatened, we often find those old thoughts and beliefs coming to mind and conflicting with what we believe. Religious and cultural beliefs surrounding death (by J.M. Waliggo) * African Illness: That which can be cured only by African traditional medicine, by African people and in a truly African way. * European illness: That which can be cured by modern/Western medicine from outside Africa by people trained in modern/Western medicine. * Incurable illness: That which goes on and on over a long time and accepts the use of African and modern/Western medicine either simultaneously or alternately. A strong belief that 'illness and death do not come by themselves' is part of the African's worldview. The implication is that if ever someone is sick and eventually dies, some enemy either living or dead must have caused it. The sick person goes through the list of people who never wished them well to identify the one who may have done this to them. The families of the sick, despite any scientific evidence showing them to the contrary, also go searching for the person responsible. As healing goes on, this belief continues to distract the sick, the family of the sick and the community who are angry as a result. The search for the culprit destroys the inner healing of the person. Counselling on forgiveness becomes crucial for a peaceful and happy death. It is here that Christianity helps considerably. It is here that some rational explanation about the causes of the disease that one is suffering from can help. Questions often asked by someone who is sick and/or dying: * Why has this happened to me? * What has caused it? * For some there may be dual feelings: Is God angry with me? (Am I angry with God?) Serious illness often tests our faith What is the cause of my misfortune? Is God punishing me? Has somebody bewitched me? What have I done that this should happen to me? Has someone put a curse upon me? (what reason would they have?) What will happen to me when I die? Are my living/dead ancestors angry with me? Have I failed to honour them as I should? People wrestling with these questions may appear: * Lonely, isolated, silent, helpless, shut in, fearful, and they may be feeling far away from God * Or they may be restless, and experience acute anxiety or guilt. * Or they may be angry, demanding, hostile and irritable. We must care for the whole person - not just bodies, but body, mind, emotion and spirit. Caring involves all of these, in includes: * Compassion - suffering with, and avoiding pat answers * Understanding- trying to understand the problem, not necessarily having the solution. * Empathy- trying to stand in the person's shoes. * Listening- in an empathetic way, not only to what they say, but to the underlying feeling shown by tone of voice, eyes and posture. Appendix E - Instructions for Surveyors 1. Introduce yourself with a friendly smile 2. Explain what you are trying to do - to assess the general attitudes of the community towards the Church and AIDS 3. Ask permission to ask them the questions. a. if they say 'yes' then proceed b. if they say 'no' then thank them and move on (keep track of how many people do not want to participate) 4. Begin to ask the Questions 1 and 2: a. Do not ask them how they feel, as they will then want to tell you what they think you want them to say. i. Ask them: 'How do you think most people in the church feel about those with HIV/AIDS?'.... ii. 'How do you think most people with AIDS feel about the church? 5. Question 3 - see if they feel the attitude of understanding and openness has changed over the last 5 years or so. 6. Question 4 - As if anyone in their family has had AIDS, or if they suspect that may have been the case. Do not press this issue, take whatever answer they give. 7. Question 5 - Assess their level of education. Mark which box they have completed. a. if they have not completed primary school, put the level they have completed in the box. (example: ' st2 for' standard 2; fm3 for 'form 3'; etc.) 8. Question 6 - Assess their religion. If they say 'Christian' indicate from the codes at the bottom what denomination. If their denomination is not listed, write it down on the back (example: if person #18 says 'Lutheran', then on the back of the paper, write #18 Lutheran) 9. Question 7 - Indicate what age group they fall under. Example: Lets say you were interviewing me, and I was the first one you talked to. The check marks for line #1 would look like this: 1 2 2 3 2 3 1i 4 Because: I am Person #1 I think that the Church as a whole has a bad attitude towards those suffering with AIDS I think the AIDS community as a whole, feel shut out from the church I think there are changes in the way people are thinking No one in my family has AIDS at this time I have completed college I am Christian/Baptist I am in my 40's This type of questioning may open opportunities to share the Gospel. Please be ready and willing to do so! But only in a very gentle, loving way. Remember, your duty as a Christian is to share the Good News, it is up to God to change their hearts and minds. Please write down any 'quotes' from the people you talk regarding how they perceive things or feel about things that sound interesting. Thank you for your participation in this survey, it will be a great help to me and I will look forward to your thoughts and feelings about how it went. Appendix F - Phenomenological/ethnomethodological Strategy with in-depth interviewing In-depth interviewing was done through established gatekeepers due to the fact that most if not all patients, and most of the volunteers as well are not fluent English speakers. Gatekeepers included Mrs. Grace Banda who has been instrumental in the development of the Home Based Care program, and Aubrey Kanyama, an ABC student who is also working with World Relief and intricately involved in their Home Based Care program, and therefore known and trusted by all those interviewed. Chichewa is the primary language for both interviewers. F.1 Reverend Akiwa Chimsolo * Pastor of Chididi Baptist Church for 10 years - Mgombe 2 Village. * 233 members currently * 1998/99 started home care program with 6 people Old attitude: * 5-6 years ago people would laugh at people afflicted with HIV/AIDS, commenting that 'it is your own fault', 'you were negligent', etc. * They would not associate with them. Current attitude: * People suffering with HIV/AIDS are part of the church family and are embraced with love. What made the change?: * World Relief supplied * Education about HIV/AIDS * Items of relief that can be distributed to those in need which demonstrated love and kindness in a tangible way * The people's attitudes changed as they became more open and aware Each person interviewed concurred with the same comments that Rev. Chimsolo was an outstanding demonstration of Christ's love as he continually sought out those who were suffering and offered them love and hope as he not only invited them to join the fellowship group, but also provided counselling, physical assistance and transport as well as sharing his own personal resources with them when necessary. It appears that he is willing to give and do anything for the cause of Christ. A story, which impacted the church congregation, was shared with this interviewer and is now added for illustration of the changes that have taken place in this congregation. It is told in the words of Grace Banda, the interviewing translator. Rev. Climsolo shared with us an incredible and touching experience worth noting which has transformed the attitudes of parents in the community around Chididi. A family early this year (2002) had a judgmental and accusing attitude towards their daughter after she was diagnosed HIV+. They accused her of the promiscuous life that she was living and that she was now reaping the fruits of that life - but the girl has signs and symptoms of full -blown AIDS. The insults she got from the parents led her to disappear in the bush for a whole week until church members of the Baptist discovered her and took her home. The Church members went to talk with the parents and a lot of counselling was done when they accepted her back home. But the stigmatisation from the parents had already done a lot of harm that she was not the same. She lived a miserable, closed life which made her life to deteriorate very badly. Within a month she died. This incidence affected the whole community up to the extent that the chief had to call for an emergency meeting to address all the people in the area. Today parents have a loving , caring and concerned attitude towards those affected with HIV/AIDS. F.2 Abiti2 (Mary) Ali Environment: Seated at first on mats in front of house with 3 women, the Pastor, several men and many children. She was apologizing for being 'dirty' because she was just coming in from working in the garden. Interview was done in privacy of small house belonging to daughter, which was located directly next door to patients house. Status: * Current HIV/AIDS patient * Diagnosed in 1999 * Involved in Christian HIV/AIDS fellowship * Involved in Chididi Baptist Church * Married several times, husband ran away last year * 6 children, born 1980, 82, 88, 91, 94, 99 (all are aware of diagnosis) * Encouraged to have testing done, relieved to finally know what was wrong * Not accepting that her behaviour contributed to her getting the disease - denies knowing how she got it, maybe razor blades? Attitudes: * Pastor Chimsolo approached her about joining the group and paid for transport for testing along with providing counsel * Viewed the church as loving and caring from the start * First person she told was her mother, was supportive and concerned if anyone else knew, encouraged pt to go slowly (reason?) * Said many people laughed at her but she did not feel bad because she was a Christian and had peace of mind due to Jesus Christ. * Says people don't laugh anymore because she has joy in her life * People don't believe that she has HIV/AIDS due to her happy spirit and healthy look * She feels surrounded by Christians who comfort and love her * She feels the diagnosis has made her stronger * Counsels others now about HIV/AIDS * Counsels her children to live a holy life and abstain * Her spiritual and prayer life have grown, quoted several verses (John 14:1; Romans 3:23 - personal Bible was recently stolen) Comments from Interviewers: Mrs. Banda and Aubrey felt that the patient was somewhat inconsistent and although she stated she was able to be open and frank about her illness due to her acceptance of it, she did not always answer questions directly and gave the impression that she was not as 'open' as she claimed to be. Affect was very pleasant and cheerful, with frequent, easy smiles. She appeared very eager to cooperate. Action taken: Send Bible (as promised to replace hers that was stolen) along with photo taken today F.3 Mr. Khirex Asimu Environment: Very neat home and village. Curtains on windows, with some screens in place. Children were busy peeling Cassava, while other adults were processing Maize. Everyone seemed to be purposefully busy. Status: * Moslem * Age - 32 * Married 8 years to same woman, Fatima Majidy * 2 children, both girls, approximately aged 6-7 and about 2 * works as a farmer and fisherman * Multiple tattoos on torso and upper limbs from witchdoctor treatments3, which seemed to be Mr. Asimu's first sought after treatment for his unknown illness and continued for 3-4 years before his diagnosis. * Healer said the problem he suffered was because his father had died and left him a fishing net. His relatives (uncle in particular) were jealous and therefore bewitched him * Joined the Christian fellowship group in 2001. Calls himself a 'pioneer' of the group * Does not know how he got HIV/AIDS, but suspects it is from the razor blades used by the traditional healer * Though the wife looks healthy - she has not been tested and it obvious that she is HIV/AIDS positive. o Very active supportive wife who encourages the husband to attend fellowship group weekly Comments from interviewers: * (Grace's comment)The first name 'Khirex' does not sound Moslem - this name has a connotation of young men who are very outspoken with women. It is possible he must have had a good time with girls in his teenage period. * (Aubrey's comment) Pastor Chimsolo's visits were a demonstration of love unlike the Mwalimus (sheiks) who have never visited him to see how he is coming with his illness. Attitudes: * When World Relief first began coming, people in the village would jeer and yell at them and those they were coming to see. * Today, this does not happen because the people have observed the love and healing that has taken place. They see love in action. * Mr. Asimu commented several times that this kind of love was not present in the Muslims. They mostly keep distant from the AIDS issue. * He tells his Muslim friends about the love he receives at the Christian fellowship * He states that Muslim leaders would not visit a sick person * He made multiple references to the fact that there was love present in the Christian fellowship and that is what draws him to it. * He was first invited by Rev. Chimsolo to join the group. Sees Rev. Chimsolo as a true Christian who demonstrated real love and concern for him * He sees the Christian Church as a place of love since he has observed it personally * Prior to this personal contact, he did not know that Christians loved like this * Has made a commitment with his wife to abstinence and plans no more children Comments: Very nice man. Soft spoken and transparent. He genuinely seemed impressed with the Christian love, which has been demonstrated to him but is reluctant to become a Christian. We will be praying for him. F.4 Abiti (Martha) Suwedi Environment: Pretty home, well maintained. She was mixing mud to fix the floor in the main room as we arrived. Many flowers and decorative plants in well manicured flower beds. Status: * 39 years old * Anglican * 5 children son born in 73, daughter 25 years old lives next door, girl born in 82, girl born in 90, twins born in 96 (boy died, girl lived) * She started getting sick after the birth of the twins1997 (1987?) * Husband died in 1998 after severe, short (days only) case of cerebral malaria * Tested for HIV/AIDS 5 times, all negative * Thought she was 'bewitched'. Herbalist said it was because she was 'well to do,' gave her herbs which made her stomach swell, so she resorted to the hospital. * Sells donuts to provide income for her family when she is well enough * Recent surgery in January at Lilongwe Central Hospital * Joined Christian fellowship group in 1998 Attitudes: * Told her mother and children immediately, shared with them the encouragement she received from the counsellors who tested her * Says people talked, and still do (gossip) but she doesn't care because they don't know Jesus Christ * Her church is supportive and her pastor will visit if she misses church * Members come and help her when she needs it and bring her things * She feels loved and cared about * Feels fellowships group is a very tight knit group * People (neighbours) used to shout at those like us and World Relief, saying 'you've come to see the AIDS patients!' * Now, because of the love they have seen demonstrated, they don't do that anymore but are helpful and try to give support Comments from interviewers: (Grace's comment) The fact that she started getting sick after the birth of the twins (especially if we consider that one twin died), there is an explanation to her HIV status. Therefore it can not be ruled out that the husband died of AIDS even though he had severe cerebral malaria in a few days - in the village environment, it is possible he may have been having bouts of headaches and fever without getting hospital assistance, he may have depended on traditional herbs until very late. Seemed very open and honest. Did say there were negative attitudes among some, but refused to partake in such gossip. She is obviously a hard worker and goes far beyond most villagers in trying to make her surroundings beautiful. Says fellowship group has grown from 6 to 37 members in last year. F.5 Joyce Chipalasa Environment: Met with Joyce and Mr. Peter Chijoge and another patient whose name we did not catch, at the St. Anne's Hospital where she works as a dietary consultant and AIDS counsellors. She is articulate and interview was done primarily in English. Status: * 31 years old * 2 children, Wezzie 13, and Patrick 6 (different fathers) * now single parent * lives with extended family and cares for children of her 2 elder sisters and brother who have all died - all 'well educated' * Diagnosed HIV+ 1995, after complaints of headache, fever * Joined NASO (Nkhotakota AIDS Support Organization) a local, secular community AIDS group * Tried to be a UNV (United Nations Volunteer) for AIDS work, but was unable to attend the interview, but was from there referred to World Relief * Began working for World Relief and speaking in churches and any opportunity she could about AIDS * She thought she was bewitched because she was working and living comfortable Attitudes: * After a radio interview, that many of her friends/relatives heard where she openly declared she had AIDS, there was a lot of flack from them towards herself and her family. Her sister and children were harassed as well as her mother. * She stopped attending church due to the attitudes there, until she was encouraged by World Relief to begin going again. * Now she is accepted and loved by the church. She is a member of the woman's choir, Daughters of the King and has been asked to take a visible role in the church, including reading of Scripture as part of the main church service up in front of the congregation. * Feels her children are exceptionally loving and supportive of her. For instance, yesterday she came in so tired she went right to bed and didn't have energy to eat. Her son fixed her mosquito net and brought her food, encouraging her to take a bite to gain her strength. Comments from interviewers: (Aubrey's comment) Her mother has also been very supportive to Joyce. This lady is a real dynamo. She is the energy and force behind the success of much of the success, which has been made by the fellowship group. There are now several fellowship groups in progress at many of the churches. She is also working on helping others write 'memory books' for their families. Her health is beginning to decline. In this last year she has suffered from TB (has one month to go of treatment) and shingles. Joyce Chipalasa has died since this interview took place. F.6 Mr. Peter Chijoge Environment: See Joyce Chipalasa Status: * Age 45 * Married a woman with a small child who became ill (age 1 1/2), now 4 and doing well * After child tested positive, it was suggested that he be tested as well. * He and his wife4 are both members of the fellowship group Attitudes: * Was afraid of diagnosis. * Afraid to reveal diagnosis to others, depressed * Says AIDS patients are treated as the lepers of the Bible and felt like outcasts * They were ostracized from village activities * Those who were sick were told, 'go away you people with AIDS', 'You give us a lot of trouble'. This attitude was prevalent in the village and in the hospital where they worked and were also patients * This attitude changed because of the Christian fellowship groups. * 1999 Church fellowship gave counsel, and hope, because of this, he lives without fear and feels he is living well * Believes he will die when the time is right, and it is OK * People in his church equated AIDS with promiscuousness * Love and education have changed people Comments from interviewers: Was very open and honest, but seemed reluctant to share his present heartache of his wife with us5. He works to educate people on HIV/AIDS and dangerous cultural practices that promote the spread of AIDS such as the marriage of a surviving spouse to a family member, and the use of razor blades for the traditional healers. Appendix G - Single-system designed randomised cross-sectional quantitative survey. Within the dissertation this report has been adjusted by percentages to give a reflection of the attitudes and ideas of the respondents. The actual figures are indicated on the charts listed in this appendix. Results of the initial survey revealed: Question #1: How do you think people in the Church feel about those suffering from HIV/AIDS? (total respondents 321)** 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. 62 36 26 59 138 Question #2: How do you think people in the AIDS community feel about the Church? (total respondents 424)** 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. 30 17 106 46 225 Question #3: Do you think attitudes between the church and the HIV/AIDS community have changed in the last few years? (total respondents 342)** 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. 100 28 89 28 177 Question #4: Has anyone in the family suffered from HIV/AIDS? (total respondents 421)** 1 2 3 Yes No Uncertain 178 151 92 Question #5: Level of Education (total respondents 416)** 1 2 3 4 5 Primary Secondary College Trade Other 222 100 15 (questionable) 54 25 Question #6: Religious Beliefs(total respondents 427)** 1 2 3 4 5 Christian* Muslim African Traditional None Other 330 66 9 21 1 * For a breakdown of the various Christian denominations, please refer to Appendix. Question #7: Age(total respondents 418)** 1 2 3 4 5 15-20 21-30 31-40 41-50 51+ 97 117 107 61 36 **The number of total respondents varies from question to question because the surveyors were instructed to allow participants to not answer any questions that they chose not to answer for whatever reason in an attempt to get accurate and honest answers for the ones they did choose to answer. Results of the ONE YEAR LATER survey revealed: Question #1: How do you think people in the Church feel about those suffering from HIV/AIDS? (total respondents 250)** 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. 0 9 1 224 16 Question #2: How do you think people in the AIDS community feel about the Church? (total respondents 250)** 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. 2 9 2 127 89 Question #3: Do you think attitudes between the church and the HIV/AIDS community have changed in the last few years? (total respondents 250)** 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. 12 12 1 81 144 Question #4: Has anyone in the family suffered from HIV/AIDS? (total respondents 220)** 1 2 3 Yes No Uncertain 141 87 22 Question #5: Level of Education(total respondents 250)** 1 2 3 4 5 Primary Secondary College Trade Other 190 57 1 0 0 Question #6: Religious Beliefs(total respondents 250)** 1 2 3 4 5 Christian* Muslim African Traditional None Other 223 27 0 0 0 46 CCAP* 70 RC 22 AoG 16 EP 3 A 2 AA 3 NA 3 UMC 57 Misc 2 JW Question #7: Age(total respondents 250)** 1 2 3 4 5 15-20 21-30 31-40 41-50 51+ 55 172 15 7 1 Question #8: Are you familiar with Partners in Hope Home Based Care which was started one year ago?(total respondents 250)** 1 2 Yes No 198 52 Question #9: Do you think the Home Based Care has helped to change attitudes between the Church and the HIV/AIDS community? (total respondents 195)** 1 2 3 4 5 Attitudes are worse now No change in attitudes Attitudes are better now 0 0 0 83 114 * 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; AA - African Abraham; NA - New African; JW - Jehovah's Witnesses **The number of total respondents varies from question to question because the surveyors were instructed to allow participants to not answer any questions that they chose not to answer for whatever reason in an attempt to get accurate and honest answers for the ones they did choose to answer. Appendix H - The Idea of Limited Good http://ist-socrates.berkeley.edu/~peis100a/lectures_material/Limited_good_chart.htm IDEAS / VALUES VALUE CHANGE REQUIRED 'Good' is finite; there is a limited amount of material good, love, friendship 'Good' is infinite; there are infinite amounts of both material and non-material goods Community is a closed system ruled by personal relationships and ascriptive hierarchies Community is an open system guided by impersonal laws and freedom. If my situation is improved, yours is worsened and vice-versa: therefore, don't try to improve your position or you will be punished and others won't like you If my situation improves, it doesn't hurt you, if fact, it may help you and vice-versa; we can both be rewarded by improvement Value cannot be created by man; it is given by God. Therefore luck is rewarded, but hard work is not rewarded; no relationship between hard work and the acquisition of wealth Value can be created through work; hard work should be rewarded Wealth is inherent in nature; there are limitations on land and technology; additional hard work will not improve anything Wealth comes from work; work and thrift create wealth Progress is impossible; it will only come at the expense of others Progress is both possible and necessary Individual achievement is punished; contentment with what you have is valued Individual achievement is valued; contentment with what you have is punished. Appendix I - Projected Project Cost by Department Partners in Projected Project Cost by Department A. Partners in Hope-HIV Clinic Phase I Staffing (24 month totals) * Project Coordinator (masters level C.O) $12,000 * 2 Registered nurses $12,000 * HIV Counsellors $10,000 * Receptionist/Data Entry $ 6,000 $40,000 Facility development Already existing Phase II Additional Staffing (12 months total) * Clinical officer ( Jr. level) $ 4,500 * Registered Nurse $ 3,000 * Records Clerk $ 1,500 * 2 Cleaners $ 1,800 $10,800 Facility Development * 1500 Sq. Foot X $20/Sq.Ft. $30,000 * Furniture, file cabinets etc $ 4,000 * Medical Equipment (Otoscopes, BP Cuffs etc) $ 2,500 $36,500 B. Microbiology Laboratory PCR Viral load * Roche Amplicor and supplies $45,000 * Training in US-1 Technician $ 5,000 * Training in Malawi - 3 Technicians $ 5,000 $55,000 CD4+ Count * Becton-Dickinson Flow cytometer for CD4+ $25,000 * Training in Malawi $ 3,000 $28,000 Hematology Analyser * Blood analyser $9,000 Staffing (24 month totals) * 2 Laboratory technicians $18,000 Laboratory totals * Equipment $92,000 * Staffing X 24 months $18,000 $110,000 C. Home-Based Care Program Staffing (24 month totals) * Project Coordinator $ 8,000 * 2 Nurses $12,000 * Driver $ 5,000 $25,000 Vehicle Costs * Vehicle $23,000 * Fuel $ 5,000 * Maintenance $ 2,000 $40,000 Volunteer Equipping * Training Materials $ 200 * 10 Bicycles $ 700 $ 900 Home Based Care Total Amount $65,900 Summary by Program * HIV Clinic $ 87,300 * Microbiology Laboratory $110,000 * Home-Based Care $ 65,900 $265,200 Cost based upon Malawian Kwacha Exchange Rate = 60MK/US$1 Appendix J - Expenses underwritten for 'volunteers' by World Relief Expenses Currently being underwritten by World Relief: (as of 24 May 2002) * Program development * Training - skills based o Pastoral Counselling (give books, writing materials, etc.) o Holistic Orphan Care, with emotional, spiritual physical support o Ministry planning - assist the ministries in making plans/goals for the upcoming year * Spiritual growth of team members (retreats, etc.) * Seed funding * Drug Access Program within the Church * Program is designed to be a 'seed' of non-prescription drugs. Package of drugs given to the churches for distribution, with expectation of the churches replenishing the supplies as they are used. * Trips (1-3) per month from World Relief staff * Family empowerment for families with orphans (seed and fertilizer) * Materials (books, pastoral counselling materials) * Transport o Bicycles -(2 per team) o Bicycle Ambulance Numbers of Patients currently involved (numbers are guesses, as they change frequently) Chididi Baptist Church 53 patients Anglican Church 20 patients Another church 8 patients Breakthroughs: * At a recent funeral, the parents of the deceased said openly that their daughter died of AIDS. * Youth groups attached to ministry teams * Decrease the workload of team members * Show youths the reality of AIDS (works as a preventative program) * Original program involved only team members, now the church is participating church wide * The patients themselves are participating in the visitation and giving as they can * Land has been identified where team members/patients can use for food production and as an I.G.A. Appendix K - Letter of dissolution to HBC volunteers Dear Partners in Hope Home Based Care volunteers, It has come to our attention that there is some dissatisfaction and frustration amongst the Home Based Care volunteers. 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 Home Based Care program which were taught and discussed at length during the training session, that of home based care serving as an avenue of benevolent ministry whereby the 'volunteers' 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 of 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 not 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 training committee 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 training committee has decided to completely disband the Partners in Hope Home Based Care volunteer visitation program. May God bless you all as you continue to serve Him in whatever ways He will lead you. Thank you for participating in the Home Based Care program. Sincerely, Mrs. Janet Brown Dr. Perry Jansen Mrs. Grace Banda Sr. Anne Mpanje Appendix L -Testimonials from Individuals participating in the churches involved in the study The testimonials below were taken (in Chichewa) by Thomas Mambo (6.3.2), the primary gatekeeper for the Chimbalame Assembly of God, and related to this researcher as indicated below. He was instructed to talk with those people within the congregation in a casual, conversational manner in order, to get an understanding of their perceptions regarding the effects of HBC on the faith community as a whole, the individuals making it up and whenever possible on their perceptions regarding the attitudes of those outside these communities. Although seventeen testimonials similar to the ones below were taken in this manner, due to the many similarities noted in each of the testimonies, only the two below supplied as a sample of the response. Testimonial number 1: Name: Mr. Jackson Mangani Age: 39 years Sex: male Marital status: Married with 2 children Denomination: Assemblies of God Relationship with HBC members: brothers and sisters in Christ Original Attitude Towards AIDS Patients: * At first I could not take the disease as a deadly one because I had already had knowledge of other sexually transmitted diseases e.g. Gonorrhoea and Syphilis, which are curable. * When I learnt that the disease is incurable I was scared and could hardly stay close to victims since I was regarding them as sinners. Reasons for the Attitude: * I had no knowledge about the disease and how it is transmitted and also how it can be prevented. Time for the Original Attitude: * I had this negative attitude before I became a born again Christian6. Present Attitude: * Soon I became a born again Christian I started learning more about AIDS both spiritually and physically. As of now, I take victims as my fellow friends who need my help and comfort. As a Christian I have a responsibility of sharing with him the word of God which brings hope to all who receive it. Did you ever visit AIDS patients before you were born again? * NO. I had no interest since I was regarding them as sinners. At present, do you visit AIDS patients? * I do visit them whenever I have time Who taught you that it is important to visit AIDS patients? * I have been learning from the church since the Scripture says we should 'carry each others burdens'. * Apart from the church even on the radio7 there are programs about AIDS which teaches people ways of getting and preventing AIDS. Have you benefited from HBC members duties in the village? * I have benefited a lot and this program has encouraged many people in the village. How do you evaluate the Church? * The church has completely changed its attitude. At first Christians were not eager to help but now many Christians are participating caring for AIDS victims. Which people are visited by the Church? * All people regardless of denomination are cared for. Are there areas of concern which need an improvement? * The church should continue encouraging its members to keep on visiting AIDS victims * The church should teach its people new and better ways of handling victims * The church should also assist providing physical needs to victims since most of them cannot work to earn money. * The church should teach its people from family level details about AIDS. What have you changed mainly? * My attitude towards AIDS victims * Number of visitations have improved * I can share with victims the word of God at present. * I sometimes share my physical things with some of the victims, e.g. food, money and clothes. Testimonial number 2: Name: Mr. Ken Knhoma Sex: male Age: 42 years Marital Status: widower Denomination: Assemblies of God Relationship with members of HBC: my fellow church members Initial attitude towards AIDS victims: * At first I was not scared with AIDS because I had no experience of how serious the disease is. I was comparing it with other STDs. How were you treating AIDS victims? * I was not concerned because I was thinking that victims need to face it. * I could not visit them because of my negative attitude Present Attitude: * I have a positive attitude towards victims. * Looking at ways of getting AIDS, there is a possibility that even innocent people can also be victims. * I don't regard victims as sinners, but I also think of my responsibility that I have to give them hope though they may be dying * I do visit the victims. Is there a need to be visiting them? * Spiritually there is need to share with them the word of God because as a believer I know that there is life after death. * Physically these victims need love, comfort and physical needs, so it is the responsibility of each one of us to be helping them Who taught you about the importance of visiting AIDS victims? * Through church meetings. * Through radio broadcast. * Through NGO. * Through hospital programs. * Through HBC. What comment do you have on the work of HBC in the village? * It is important to have HBC members within the community * Members are able to teach family members of the victims improved methods of caring for victims based on the word of God. * Members are also able to teach through their actions other community members good ways of caring for AIDS victims. How do you look at the church? * There is a big difference between how the Church was dandling AIDS issues and how it is doing now. * At first the church had not enough knowledge about AIDS and it could treat victims as sinners/outcasts. It could hardly visit victims. * At present many church members including myself take part visiting AIDS victims and even giving them other needs. Which people are visited? * All victims are visited including non-church members. Are there areas of concern? * The church should continue to visit the victims so as to maintain this hope towards God. * The church should continue to be assisting by supplying physical needs such as food, clothes, beddings. * The church should take care of the well-being of victims, eg. Washing victims beddings, etc. * The church should be teaching its members more about AIDS so thtat they can fully be aware of AIDS. What have you mainly changed? * I was not visiting AIDS patients * I could hardly share any things with victims. * I could hardly eat with them At present, what has changed? * I visit them. * I share with them the word of God. * I talk to them freely. * I share with them the little I have, like food. * I draw water for them. 1 See HBC Training Manuel in Appendix D for full training curriculum. 2 Abiti is a title assumed by a daughter in respect for her father when she takes her husbands name in marriage. Instead of being called by her married name, she takes the title Abiti, followed by one of her father's names (first, middle, last, etc.) Can also be done by single women. This is a Yao tradition. 3 Common treatment used by herbalists when it is suspected that bewitching has taken place. 5-6 small cuts, approximately .5cm, 1-2 mm apart are made on the skin of torso, arms or forehead. A black compound, made of herbs is then rubbed into the open wounds to cure the patient of the curse. 4 Patient was reluctant to share this, but it seems his 'wife' found another man in the fellowship group that she left her husband for and he is now single - Joyce (counsellors/patient) cleared this by explaining this bit of story, which Peter was not comfortable to share. 5 Patient was reluctant to share this, but it seems his 'wife' found another man in the fellowship group that she left her husband for and he is now single 6 In many of the testimonies, the phrase 'born again Christian' is synonymous with the individual's coming into the faith community. 7 Radio ABC 88.3 FM is a Christian radio ministry of African Bible College and as part of their regular programming, broadcasts informative information regarding HIV/AIDS and the Christian perspective. 345