Home care for people living with HIV
I
AIDS in Ghana
February 14nd 1999
Master's thesis
Maud Radstake Medical Anthropology
Institute of Political and Socio-Cultural Sciences Faculty of Societal and Behavioural Sciences University of Amsterdam
Summary ... 3
Samenvatting ... 5
Acknowledgements ... 7
1 lntroduction ... 9
A1n1na Birago ... 10
Ambiguities of home care ... 11
Secrecy ... 16
Narratives of disease and illness ... 18
Con1munication between health workers and clients ... 21
2 The setting ... 23
Ghana's population ... 23
The health care systeni ... 24
The HJV/AIDS situation ... 25
The Kumasi AIDS prevention project ... 26
The research participants ... 30
3 From research plan to thesis ... 33
The research propvsal ... "" ... 33
Change ofplans ... 34
Data collection ... 36
Data analysis ... 39
Writing the thesis ... 39
4 The family is a forest: ambiguities in home care ... .41
Reciprocity and respect in fa1nily care ... 42
Horne and fan1ily care in AIDS care policy ... 45
Care and coping ... 47
l\1eanings of care ... 48
Kwaku Osei ... 52
The dynamics of family, marriage and household in Ashanti ... 60
.4kosua Agyeiwaa ... 64
Caring for people with lllV/AIDS ... 70
5 Heavy mouths: secrecy in family, marriage and household ... 81
Secrecy ... 81
Secrecy and AIDS ... 82
11ieresa Yeboah ... 85
The strategy of secrecy ... 89
Abe1u1a Boagyewaa ... 94
Beyond secrecy ... 99
6 Witchcraft, curses or 'just sickness': narratives of disease and illness ... 101
Disease and illness narratives ... I 01 Edward Antwi ... 104
Witchcraft, curses and other common themes in illness stories ... 108
Adwoa Achiaa ... 114
Narratives in conununication ... 121
7 Communication between health workers and their clients ... 123
A conspiracy of silence: health workers on secrecy and stigma ... 123
Confidentiality ... 127
Considering secrecy in the communication between health workers and their clients ... 130
Afua JJapaa ... 132
Differing stories ... 135
'Denial' ... 136
Consequences for counselling and care ... 141
Kofi ()poku ... 144
Communicatiou and power ... 150
8 Conclusion ... 153
Appendix: Research participants ... 157
Summary
This thesis is based on fieldwork that was conducted from May to November 1996 in the Ashanti region in Ghana. Data analysis and writing continued till 1999. The objective was to
question the feasibility of home-based care for people living with HIV AIDS, especially the concept of the 'caring family', on which the concept of home-based care is built. A team of professional health workers, who were followed during home visits and their work in a district hospital, introduced me to sixteen people with HIV/AIDS and some of their relatives.
The original idea was to focus on what it means for relatives and people in the household to care for someone with HIV/AIDS. During introductory conversations with the
patients, however, it appeared that AIDS was not discussed openly. Intrigued by the secrecy, I shifted the focus from the relatives to the people with HIV/AIDS themselves. Although patients became the main research participants, family care remained a central theme.
Most data was collected through interviews and was supplemented by (participant) observation and the study of documents and literature. Data analysis was qualitative.
Four themes relevant to how people with HIV I AlDS and their relatives cope with their sickness and its effects on home care are dealt with in the core chapters of the thesis: the ambiguity of home care in chapter four; secrecy in chapter five; alternative narratives in chapter six; and communication between health workers and clients in chapter seven. Case stories have been used to illustrate the main points.
Informal health care provided at home appears to be ambiguous. People ascribe different meanings to 'care'. The concept of 'family' is complex as well. The abusua or matrilineage is central to the Ashanti social organisation, but its role in family care is limited. For practical support, the household is more relevant.
Respect and reciprocity are central features in family and household relations. In
families living with HIV/AIDS, these relations are often disturbed. People infected with HIV are usually young and oft.en have a history of travel. They do not meet the expectations of their family, but lean on them heavily. The medical complexity of AIDS, the stigma attached to it and the widespread poverty, all lead to the conclusion that it cannot be taken for granted that families care for people with HIV/AIDS.
The ambiguity of home care is enforced by secrecy. Among the Ashanti, secrets arc oflcn shared among relatives. However, most people diagnosed with l l!V try to keep it secret
from all others, including relatives. They balance the costs and benefits of disclosure and often choose for secrecy as a coping strategy. They consider disclosure a threat to getting
care.
For many people diagnosed with HIV or AIDS, the hospital diagnosis is not the most likely or relevant explanation for their sickness. They have alternative stories, or narratives. The stories of people with HIV/AIDS and their relatives reflect what is important and relevant to them. Witchcraft and cursing are common themes.
People's stories differ from what health workers believe. When these different
narratives come face to face in the area of health care, communication problems occur. Health workers value secrecy negatively and tend to regard alternative narratives as denial. For people living with HIV/AIDS, these are coping strategies for which no alternatives are available.
The conclusion of the thesis is that the home is not a self-evident basis for health care. Moreover, the project under study was not truly home-based, but initiated and implemented from a hospital. It did not meet the present needs of its intended beneficiaries. People with HIV/ AIDS are not actively involved in health care, but regarded as rather passive receivers.
The study does not offer any practical suggestions for the implementation or improvement of home-based care in Ghana, because an important prerequisite is not met. As long as AIDS cannot openly be discussed at least at the family level, home-based care is not a feasible option for people with HIV/AIDS in Ghana.
Samenvatting
Deze scriptie is gebaseerd op veldwerk uitgevoerd van mei tot november 1996 in de Ashanti-regio in Ghana. Data-analyse en schrijven duurden tot 1999. Doel was de haalbaarheid van professionele thuiszorg (home-based care) voor mensen met HIV/AIDS ter discussie te stellen, met name het idee van de 'zorgzame familie', waarop thuiszorg zich baseert. Een
team van professionele verpleegkundigen, die werden gevolgd tijdens huisbezoeken en hun werk in een districtsziekenhuis, bracht me in contact met zestien mensen met HIV/AIDS en een aantal farnilieleden.
Het was oorspronkelijk de bedoeling onderzoek te doen naar wat het voor farnilieleden en rnensen in het huishouden betekent orn te zorgen voor iernand met HIV/AIDS. Tijdens kennisrnakingsgesprekken met de patienten bleek echter dat AIDS niet bespreekbaar was. Gei:ntrigeerd door de geheimzinnigheid besloot ik me te richten op de mensen met HIV/AIDS zelf in plaats van op hun familieleden. Hoewel de patienten de
belangrijkste deelnemers aan het onderzoek werden, bleef familiezorg een centraal thema. De meeste data werden vergaard door middel van interviews, aangevuld met (participerende) observatie, literatuurstudie en documentenonderzoek. De data-analyse was kwalitatief
De kernhoofdstukken van de scriptie behandelen vier thema's die relevant zijn voor hoe mensen met HIV I AIDS en hun familieleden omgaan met de ziekte, en de effecten daarvan op thuiszorg: de ambigulteit van thuiszorg in hoofdstuk vier, geheimhouding in hoofdstuk vijf, alternatieve verhalen in hoofi:istuk zes en communicatie tussen
gezondheidswerkers en clienten in hoofdstuk zeven. Case studies illustreren de belan!:,rrijkste argumenten.
1nformele gezondheidszorg in de thuissituatie blijkt ambigu. 'Zorg' heeft verschillende betekenissen voor rnensen. Het concept van 'familie' is ook complex. De
ahusua, de verwantengroep langs de moederlijke lijn, staat centraal in de sociale organisatie van de Ashanti, maar haar ml in familiezorg is beperki. Voor praktische ondersteuning is het huishouden een meer relevante eenheid.
Respect en wederkerigheid zijn van groot belang in de relaties binnen familie en huishouden. Die relaties zijn vaak verstoord bij families die geconfronteerd worden met !!IV/AIDS. Mensen die gefnfecteerd zijn met HIV zijn vaak jong en hebben gereisd. Ze
voldoen niet aan de verwachtingen die de familie van hen had, maar leunen we! zwaar op hen. De complexe medische kenmerken van AIDS, het stigma dat eraan verbonden is en de wijdverbreide armoede, Jeiden tot de conclusie dat familiezorg voor mensen met HIV/AIDS
niet vanzelfsprekend is.
De ambigulteit van thuiszorg wordt versterkt door geheimhouding. In Ashanti delen familieleden geheimen vaak met elkaar. Maar de meeste mensen met HIV proberen de diagnose geheim te houden voor anderen, ook voor familieleden. Ze wegen de kosten en baten van openheid tegen elkaar af en kiezen vaak voor geheimhouding als strategie. Zij zijn
bang er niet voor hen gezorgd zal worden als zijn open zijn over de diagnose.
Veel mensen met HIV/AIDS vinden de diagnose van het ziekenhuis niet de meest waarschijnlijke of relevante verklaring voor hun ziekte. Ze hebben altematieve verhalen. De verhalen van mensen met HIV/ AIDS en hun familieleden weerspiegelen wat voor hen belangrijk en relevant is. Vee! verhalen gaan over hekserij en vervloeking.
De verhalen van mensen verschillen van wat gezondheidswerkers geloven. Als die verhalen elkaar in de gezondheidszorg tegenkomen, zijn communicatieproblemen vaak het
gevolg. Verpleegkundigen staan negatief tegenover geheimhouding en hebben de neiging alternatieve verhalen als ontkenning te beschouwen. V oor mensen met HIV I AIDS zijn het echter manieren om met hun ziekte om te gaan, waarvoor geen altematieven voorhanden zijn.
De conclusie is dat het huishouden geen vanzelfsprekende basis is voor gezondheidszorg. Bovendien ging het project waarin het onderzoek plaatsvond niet echt uit van de thuissituatie. Het werd gei"nitieerd en uitgevoerd vanuit een ziekenhuis. Het project sloot niet aan bij de huidige behoeften van de beoogde begunstigden. Het onderzoek levert geen praktische suggesties om professionele thuiszorg in Ghana uit te voeren of te verbeteren, omdat er aan een belangrijke voorwaarde niet voldaan wordt. Zo lang AIDS niet open!ijk besproken kan worden, tenrninste binnen de familie, is professionele thuiszorg geen haalbare
Acknowledgements
This Master's thesis in Medical Anthropolot:,ry is an outcome of fieldwork carried out in Ghana from May to November 1996 and the subsequent processing of data and literature. Many people have supported me before and during this process.
The first person I want to thank is Prof. Dr. Sjaak van der Geest, who attended to the writing of the research proposal and the preparations for the fieldwork, kept in touch with me during the fieldwork period and supported me in the long period of time between coming
back from Ghana and finishing my thesis. I tested his patience, but he kept his confidence in a good result and that pulled me through.
I also thank Dr. Eis van Dongen for her comments on an earlier article, which I used for this thesis and Prof Dr. Corlien Varkevisser for her comments on an earlier version of my research proposal. I thank Preti Kirbat for her correction of my English.
Dr. Kwabena Adanse-Pipim, Dr. Max Kyei and Dr. Kwasi Boahene of the African Foundation for AIDS Prevention And Counselling (AFAPAC) in Amsterdam offered valuable practical and moral support in preparing for the fieldwork and writing the thesis. I am very grateful to them.
Several people in Ghana, although not directly involved in my research, cleared the way to other people and opem~d my eyes to interesting places and ideas. These are Dr. Kodjo Senah of the Department of Sociolof,iy, University of Ghana, Legon, Sister Quaye of the
School of Hygiene, Korle Bu Hospital, Accra and Mr. Philip Ampofo of the Ministry of Health in Kumasi. I thank them all.
For reasons of privacy, I have chosen not to use the real names of people and places involved in my study. Without using names, I want to thank the hospital staff of the district hospital from where I started my research: the medical doctors, the nurses, the administrators, the drivers and everyone else who helped me to carry out my work.
I owe a great debt of gratitude to the members of the home-based care team for people with HIV/AIDS, for sharing their work with me. The head of the team, named Paul in this thesis, deserves a special acknowledgement. I was impressed by his dedication to my work.
Without Doris, the pseudonym used for my assistant and interpreter in this thesis, my work would have been impossible. Besides her work, I also appreciated her personal support.
I am thankful to Agnes Manu, who allowed me to stay in one of her rooms. She was like a mother to me and greatly contributed to the personal learning experience that my stay
in Ghana was for me. The other people in the house, her relatives, friends and fellow-villagers made me feel welcome and at home.
I thank my husband Michel Loeve, for everything.
Most importantly, I express my deepest gratitude to the participants in my study: the people with HIV I AIDS and their relatives, those who are mentioned in this thesis and those who are not. Many people were ill when I spoke to them. Despite their sickness they gave their time and attention to me. I admire their strength. Five people died during the fieldwork period and several others have lost their struggle to AIDS since I left Ghana. This thesis is written in memory of them and dedicated to all those who are still struggling.
Maud Radstake
Amsterdam, February ] 411 d 1999
1
Introduction
In May 1996, I went to Ghana for a six month period of fieldwork on home care for people living with HIV/ AIDS. In the Ashanti Region, where the study took place, one home-based
care project for people with HIV/AIDS was operative at the time. The nurses of one of the four home-based care teams introduced me to my research participants.
In several African countries, home-based care came in vogue when hospitals could no
longer cope with the growing number of AIDS patients. Home-based care consists of professional health workers providing (para-) medical care in people's homes, while relatives or household members are responsible for daily care. It is supposedly built upon the caring capacity of families and households.
That is why I decided to study home and family care, i.e. health care provided to sick
people in their homes by non-professionals, often relatives. I interviewed people living with HIV I AIDS, some of their relatives and members of the home-based care team. Furthermore, I went with the team on home visits and observed contacts between health workers, patients and relatives. One of these clients was Amma Birago. Her case story will introduce the main themes of this thesis.
The second and third chapter of the thesis deal with the setting and methodology of the research. Chapter four is on home care, chapter five on secrecy, chapter six on narratives
and chapter seven on communication. This introduction follows the same layout as the thesis. The sections, besides the first one which introduces the person of Amma Birago, correspond with the core chapters (four to seven) of the thesis. Concepts central to the chapters are put in bold italics.
Amma Birago1
Paul (participant number2 20), the head of the home-based care team, introduced me to Amma Birago (p.n. 10) on one of my first home visits, during the second week of my stay. Amma was about thirty years old and was living with four of her six children, her mother,
several aunts, sisters and cousins and their children in a family house in a small town along the main road to Kumasi. Amma was lean, but apparently not sick. Her last-born however, a one-year old boy, had been sick from the day he was born.
Paul told me that Amma went to Abidjan, the capital of the neighbouring country of Ivory Coast, when she was fifteen years old. Abidjan is known for its high number of people, especially Ghanaian immigrants, with HIV. Several of Amma's sisters, aunts and cousins
were staying in Abidjan as well.
Amma had been married to a Ghanaian man in Abidjan. He died three years ago, apparently of AIDS. Amma went back to her home-town about one and a half year ago, taking their five children with her. She gave birth to her last-born in the hospital. Because of her travel history and condition and the boy's state of health at birth, she was tested for HIV. She was found to be HIV-positive and counselled accordingly some months later. Her reaction was calm and the counsellor doubted if she understood the implications. She said that she would tell her mother about it and d!d not seem to worry about her reaction. Jt was not clear whether Amma indeed told her mother that she was HIV-positive.
Two of Amma's sisters died recently. The first one, who lived at home, did not survive a sudden sickness one and a half years ago. The other one had been to Abidjan like Amma and had come back home sick. She was brought to the hospital in critical condition
about a half year ago. She was tested for HIV and found positive. Since the woman was unconscious, Kate (p.n. 21 ), another member of the home-based care team, decided to tell the diagnosis to the mother, Adwoa Manu (p.n. 17). For no apparent reason, Kate also told her that her daughter Amma and her son Edward (p.n. 16) suffored from the same condition. Shortly after that, Arnma's sister died.
1 All names of' people in this thesis are pseudonyms, because of the sensitivity of' the subject For the same reason, the name of' the hospital is not mentioned either.
2 Research participants are listed by number in the Appendix. Their appearance in the thesis is accompanied by
their participant number (p.n.). The list can be used as background information when reading case stories or citations in this thesis
Adwoa, who was almost fifty years old, was now taking care of three orphans left behind. Neither the HIV-condition of her deceased daughter nor of the hvo other children was
ever discussed during our contacts with her or another relative. During a home visit, Adwoa once told Paul that she did not want her children to know that she was aware of their condition.
Amma's brother, Edward Antwi (p.n. 16), stayed with his two wives and children in a house near the family house. His story is told in chapter six. Edward had been sick since he was in Nigeria, almost fifteen years ago. He was found positive for HIV about two years ago,
after his wife's blood was tested for donation to their new-born twins.
Amma was visited by the hospital's home-based care team on every round of home visits. Edward was sometimes paid a short visit
Amma shared several characteristics with other participants in my study. Over two third of the sixteen research participants were female, and most of them were single. Only two
participants did not have children. Almost everybody in the sample had travelled, mainly to Ivory Coast. Amma lived with her mother and other relatives, just like five other female participants.
Ambiguities of home care
During our first conversation, Amma told me why she had come home and how she felt about
it.
Me. Did you come back from Abidjan because your husband died?
Amma. Yes. When he died, I faced so many problems. Then my parents wrote me a letter to say that I should come home. That is why I came back. I did not come immediately after my husband's
death, because there were fights between Ghanaians and lvorians3. So I waited until it was
safe, and then I went
Me. Is your life better now that you have returned to your family?
Amma Life there and life here are not the same. Your home town is always better Even if it is not better, it is your home town. If something happens, I have family here.
3
I also spoke with Amma's mother, Adwoa, about the subject, some weeks later when Amma was not around.
Adwoa. Amma gave birth to her first child and then she went to Abidjan. You know that another daughter is also in Abidjan now? I thought that Amma had died there. She was there for a
long time and I never heard from her. Recently she came back. It was a surprise.
Me. Were you happy when she came?
Adwoa. Yes. You know, she brought six children.
Me. Yes, didn't their arrival cause you problems?
Adwoa. Well, they were there. I could not tell them to pack their things and leave again. She had travelled and came back with nothing. No clothes, nothing. Only to bring more burden on me. The other one who has travelled to Abidjan has not returned yet. The two others, who have died, had also been there. With the one who is there now, it will be the same. She will come back with nothing. It makes me sad.
Although Amma worked on the family fann and grew crops which she sold at the local market, she could not support herself and her children. She sent her oldest daughter to
Kumasi, where she lived and worked with a hawker. Her son went to stay with an uncle and learnt to be a mason. However, even without the two older children, Amma did not manage to make enough money to feed her family. The situation deteriorated when Amma gave birth to her sick baby and also fell sick herself from time to time. She could not work as hard as before. When her mother, sisters or other relatives in the family house did not support them, Amma and her children could not eat. Support was often lacking because the whole family
was poor.
Besides financial and material support, Amma needed medical assistance. She used different resources in case of health problems: her husband had died in an Ivorian hospital, but should have been treated by a herbalist according to Amma; Amma herself bought herbal medicines from a hawker when she fell sick in Ghana; her mother bought medicines for the sick baby at the local pharmacy; Amma gave birth in the hospital; and since she was visited by the hospital team, she used the pharmaceuticals they gave her for the baby and herself
In times of sickness, Amma consumed most care at home. For practical assistance, with cooking, washing and other household jobs, she depended on people in the household,
mostly relatives. Lay advise about diet and proper behaviour in case of sickness were other components of home care.
Both Amma and her mother felt that relatives were supposed to care for each other in times of sickness.
Amma: When a relative is sick, you have to care for him. Why? Because you are family.
Adwoa: If I do not care for them, who will? We are family, you know.
To the Ashanti, the ethnic f:,TfOUp to which Amma, Adwoa and the other research participants belonged, family are the people that belong to the same matrilineal group, the abusua. The abusua is socially responsible for its members. When talking about care for the sick however, the household is a more relevant unit. Household members can, but need not, be abusuafo (members of the same abusua). The moral obligation to care for a sick relative has to do with belonging to the same abusua, but actual care is provided in the household.
Households consisting of nuclear families (husband, wife and children) are not very common in the rural area where the study took place. Only three out of eight married participants lived with their spouses. Households more commonly consisted of a mother, her daughters and their children, sons and sometimes sisters with their offspring or brothers.
There is more to home care for sick people than family responsibility and moral obligation. Relatives are supposed to care for each other, but reality is often different. The
main cause is lack of money, according to Amma and Adwoa. Answers to questions on support and care almost always referred to money.
Me. Now both your daughter and your son are sick. What do you do to help them?
Adwoa. I have nothing to help them with. I only pray for them. There is no money.
Me. But apart from money and praying, do you support them in other ways?
Adwoa. Well, when someone is sick here, we just try to send him to the hospital. Nothing else.
I asked Amma who took care of her when she was sick.
Amma. Nobody cares for me. It is only God.
Me. What about your mother? Does she support you?
Amma. Yes. Sometimes I ask her for money When my son's temperature is very high, she buys some medicines for him When my mother cannot get me money, I have nobody to help me.
Me. Does she help you with cooking or other things?
Amma. When I was sick, she prepared food and everybody ate from it
Me. Apart from your mother, is there nobody you can go to for help?
Amma I have nobody. Since I got up in the morning, I have not eaten. I have no money, because I have nobody here. If I ask my mother and she cannot get it for me, that is alL
Initially Amma referred to financial and material support from her mother when I asked about family care. Practical support was only mentioned when I brought it up. The association of care with money was commonly found during the research.
Money also featured in relations of reciprocity, often underlying home care. I used to give Adwoa some money to buy food for the family after my conversations with her, when Amma had gone to the farm One day we met Amma some time after we had visited her mother. She told us then that she and her mother were not on good terms. Adwoa had not shared the money, neither this nor the previous time. Amma said that her mother was fighting
with her all the time. She would rather have stayed in Abidjan and was afraid to leave her mother alone with her children. She took them with her to the farm: she could not afford to send them to school, nor look for another place to stay. According to Amma, she and her mother were on bad terms, because she came back from Ivory Coast "with nothing, only a lot of children".
Generally speaking, solidarity and responsibility are not the only reasons for people to take care of others. It is in the family's own interest to care for a sick relative, because they need his4 social, emotional and economic input They will be more willing to provide care when they can expect something in return, or when they feel they are paying back for what
the sick person has done for them in the past
In Amma's case, reciprocal family relations were distorted. Similar to most people infected with HIV, she was young. At this stage of her life, she was supposed to take care of herself, her children and her elderly parents. She had been cared for as a child and now her time as a care-giver had come. But the roles were reversed: Amma was in need of care and depended upon her mother.
Another distortion was due to Amrna's travel history. Like most migrants, J\mma left her home-town to escape poverty. However, she did not succeed in making money in Abidjan
·
-'1 Or her For reasons of reading convenience, I have chosen to refer to patients or other people in the general sense as males In cases where 'he', 'his' or 'him' terms have been used, I also mean 'she' or 'her'
and was unable to send anything to her family during her absence. When Amma came back,
she had not been home for fifteen years. She was worse off than when she left: she did not have any money and had become an outsider in her own family. This also holds true for many other participants in the study. Many of them had made money during their stay outside Ghana, but used all of it for treatment of their sickness.
In Amma's case, it was likely that her actual condition was another contributor to the imbalance of providing and receiving care. Her mother knew that she was HIV-positive. She
knew from educational messages th~t Amma could not be cured. That made caring for her even less rewarding. For most other research participants this connection could not be made as easily, because officially none of their relatives knew about their serostatus.
From my conversations with people, I concluded that respect, seemingly an altruistic motive to care for a sick relative, had to be earned. It was part of reciprocity. Respect was often linked to money. Adwoa told us that people in the town praised and respected her for
taking care of her orphaned grandchildren. However, she did not consider them supportive, because they did not give her money or other things. When I tried to t:,>rasp the meaning of
'respect' in relation to sickness, Adwoa talked about money again.
Me. Does someone get more or less respect when he is sick?
Adwoa. If you are sick and you do not have money, somebody will give you money. If nobody gives you money and God does not help you, you die. If you do not have money to go to the hospital, people do not respect you. But if you have money to go to the hospital and you recover, everybody will respect you.
Me. When one of your children is sick, like your son Edward now, and you do not have money to
send him to the hospital, do people not respect you?
Adwoa. They do not respect us for that. People say: "Your son is sick. Why don't you send him to the hospital?" They say that, but they do not give me money to send him there.
Me. What do you do then?
Adwoa. Nothing. I just tell them that I have no money and that when I have money, I will send him to the hospital.
Me. When you have problems, like when Amma came back from Abidjan unexpectedly with so
many children, do you discuss it with people?
Adwoa. No. Sometimes people ask me: "Your daughter who has travelled, has she come home yet?" Then I say no. And then when Amma came back with nothing, people said "O, we are so
sorry for you " But whethe~ I talk about it or not, it has happened.
Me. Is that a matter of respect? Are you afraid that people will not respect you when you tell about
Adwoa. I know that when I tell people, they will not give me a pesewa5. So I prefer to keep problems
to myself.
Adwoa's complaints and behaviour were understandable. She tried to care for her grandchildren, but one of them was severely malnourished. Her daughter Amma was still working, but her son Edward was so sick that he could not work. As an elderly woman, she had expected to be able to depend on her children. Instead they needed her.
The story of Amma and Adwoa resembles the cases of other research participants in several respects. People state that family members must care for each other in times of sickness. Howver, that moral obligation comes from relations in which reciprocity and respect are central features. Precisely these values become problematic when the sick person involved is young, has travelled and is infected with HIV. Poverty and lack of money exacerbate the
problem. Home care appears to be full of ambiguities. Chapter four further elaborates on this subject.
Secrecy
Research participants kept different things secret from different people. Some were reluctant to tell me that they had been to Ivory Coast. Several people did not discuss beliefs and actions that did not fit into the medical explanation for their condition (belief in witchcraft, visits to a herbalist) to the team members. But most central was the secrecy about being diagnosed as HIV-positive: many people did not tell me, and most did not tell other people about it.
Adwoa knew that her children were HIV-positive. This was quite unusual. No other relative of a research participant was told that a relative was infected with HIV without the patient's consent. Nurses and doctors used to keep this information confidential.
Although it seems an important difference, the actual situation for Amma and her brother Edward did not differ much from others'. Their mother said to Paul (p.n. 20) of the team that she had not told Arnma and Edward that she knew that they were HIV-positive, and never discussed the subject with me. Edward was very clear about the fact that he did not want any of his relatives to know about it. Amma never mentioned AIDS or HIV. Relatives of
5
Small unit of money that is not in use anymore. Its value was 0,0 I cedi, the Ghanaian currency. In 1996 thousand ccdis equalled one Dutch guilder.
several other research participants often also suspected what was wrong with a sick relative and might have adapted their behaviour to that knowledge. Secrecy was a central theme in all cases: living with HIV/AIDS was never discussed openly when either a relative or, in case I spoke with a relative, the sick person himself was around.
During my conversations with Amma someone else was always present: her children, a cousin, a neighbour or her mother. That might have been the reason why she did not tell me about the hospital diagnosis.
Me. You got to know the hospital people when you delivered your baby, didn't you?
Amma. Yes.
Me. Did you tell them that you were sometimes sick yourself?
Amma. Yes. They gave some medicine for me and all the children to take.
Me. Now they visit you regularly. Why is that?
Amma. Yes, they bring me some medicines and sometimes I bring them some cassava or palm nuts. That is how we came to be friends.
Me. Did the hospital people talk to you about your sickness? Did they tell you what was wrong?
Amma. They said that if I was sick, I should come to the hospital. And if my baby is sick, I should
bring him. The doctor did not collect anything from me, he rather gave me something6.
Me. When they visit you, do they come for you or rather for your son?
Amma. They come to see the children, they always ask for my last-born.
Me. But the last time, you got medicines yourself, not the baby.
Amma. 0, I had a cough then, but it is gone now.
During my conversations with Adwoa only her grandchildren were present. However, she did not talk about HIV/AIDS either.
Me. Your daughter who died just recently, what was wrong with her?
Adwoa. She was sick. We sent her to a hospital. There they said that her sickness was serious, so we sent her to your hospital. There she died.
Me. What was wrong with her?
Adwoa. She had to go to the toilet all the time. And there was something swollen in her throat. She could not swallow anything and she complained that she was hungry all the time.
Me. What did the doctor tell you?
Adwoa. They told me nothing
1
' If they have the resources, the members of the home-based care team do not charge their very poor clients for
On another occasion:
Me. Your son Edward is sick now. What is wrong with him?
Adwoa (irritated). I am not a doctor. How can I know what sickness he is suffering from?
Amma told me that she did not share her problems with anybody, including the home-based care team. When I asked her why, my research assistant explained to me that "in Ghana here,
we do not tell our problems to everyone. When we have a problem, we share it with the family, but not with others." Amma agreed with her. She tried to answer the questions the
health workers asked her, but felt that she could not go to them to share her problems.
One can oniy guess why peopie are secretive. Secrecy itself makes discussing secrecy impossible. It is however likely that people keep things secret for strategic reasons: they fear the consequences of disclosure on their relations with others and especially on home care. In chapter five secrecy as a strategy is discussed further.
Narratives of disease and illness
Chapter five deals with the issue of secrecy as 'things that are not told' and chapter six is about the things that are told. The distinction is subtle, but relevant. Health workers see the fact that people do not talk about their sickness as the main obstacle to providing efficient health care. They emphasise the negative: secrecy and silence. However, for people living with HIV/AIDS, it is a positive coping strategy. They tell their own stories and keep things secret, because they hope to obtain the best possible care.
People talk about their sickness and the contents of their stories vary over time and
according to whom they talk. As with secrecy, there is often a strategy behind what people tell to whom. Narratives can be used in maximising care, both formal and informal.
During my first interview with her, Amrna told me about her husband's sickness and death.
Me. What sickness was your husband suffering from?
Amma. That sickness was in his stomach. There were some rashes outside, but we did not know that
there were some inside as well. When people saw it, they said that it was ananse7. He was
having dizziness, sometimes he will go to work and come and sleep and say that he is sick. There is one very big hospital there where we were staying. They sent him there one Sunday. He was there for one week exactly and died then, at eight o' clock in the morning.
Me. Were it only the rashes that were bothering him when he got sick?
Amma. Yes. Gradually they were able to get around (his body). If they are able to get around, you die. The outside one went off, leaving the inside one, so he died of it.
Me. What caused this sickness?
Amma. I do not know that kind of sickness. I did not know the name until some people told me.
Me. Is ananse a sickness that can be treated in the hospital?
Amma. No, only by abibiduro 8. But by husband could not get that to treat himself. They do not have it
there9.
Me. Why is it that the hospital cannot treat this sickness but a herbalist can? Is it something
different that causes it?
Amma. I do not know, but people say that it is only abibiduro which can treat it. If you go to the hospital with this sickness, they cannot treat it.
Me. In Abidjan, were there any relatives around to help you?
Amma. No, there were no people from the family, only from this town.
Me. Did they support you?
Amma. When he was sick, some people contributed money to bring him home for treatment, but others refused. That is why we sent him to the hospital, where he died.
We also spoke about her own sickness.
Me. The sickness your husband suffered from, have you had it yourself?
Amma. Yes, when I came home from Abidjan, I was attacked by that sickness. But I used some
abibiduro and it stopped.
Me. How is your health now?
Amma. I have fever and sometimes I have dizziness. Some weeks ago, I was sick, but now I am better
Me. What did you do when you fell sick? Did you go to the hospital?
7
A11anse literallv means 'spider'. It is the name given to a disease in which the main symptom is body rash One of the other research participants, Adwoa Achiaa (p. n I I), suffered from what a health worker diagnosed as 'herpes zoster', which is biomedically seen as a general symptoms of HIV/AIDS Adwoa herself said that it was a11m1.1e
~'Black man's medicine', i c herbal medicine.
9
I.e. in Ivory Coast. According to several research participants, Ashanti can only get treatment for certain sickness in their home-country.
Amma. I was not having money, so I did not go to the hospital.
Me. What did you do then?
Amma. There is a man who comes here sometimes to sell herbal medicines. I bought some from him and took it.
Me. Did it help you?
Amma. Medicine does not work in one day. But when I took it for some time and I laid down, I felt better.
Her son's sickness was also discussed.
Me. What is wrong with your baby?
Amma. I think it is malaria. His temperature is always high.
Me. Do you bring your sick baby to the hospital?
Amma. I usually bring him to the mother-and-child clinic when they are in town. But the last time they came, I did not have money, so I did not bring him.
Me. Paul and Kate 10 come to visit you sometime. Do they bring medicines for the baby?
Amma. They have not brought any medicines for a long time. That is why he is always sick. Sometimes I buy some medicines at the drugstore for the fever. But he has diarrhoea as well.
Me. Have you looked for herbal medicine to treat your baby?
Amma. No.
Me. Why not? Can his sickness only be treated by the hospital?
Amma. Because I have no money, that is why sometimes I use herbal medicine. But if I have money, I will go to the hospital. I know that the hospital is very useful, if only I had the money.
The dynamic whole of explanations and actions connected to a sickness or episode of sickness will be called a narrative in this thesis. Narratives are central to the sixth chapter. Amma used different narratives to explain her husband's, her own and her baby's sickness.
Each story contained elements from a particular illness experience, but also more general ideas about disease.
For some cases of sickness, herbal medicines were the only remedy. Arnma also used
them sometimes for sickness which should be treated with pharmaceuticals, when herbs were cheaper than pharmaceuticals. Decisions were not only based on ideas: money was an important determinant again.
Arnma's story varied according to whom she told it to. Arnrna did not talk with the team members about r.monse and using herbal medicines: she knew their explanation for her
111
and her husband's sickness and was told not to use abibiduro. During our talks with her, when relatives were present, she only emphasised these elements, and thus distracted us and them from questions about the hospital diagnosis.
Amma's narratives were different from the explanations and actions promoted by health care professionals. In chapter six the narratives of patients are discussed and in the next chapter the health worker's narratives appear.
Communication between health workers and clients
Although most care is provided by lay people at home, professional health workers also
provide care in people's homes. They have their own narratives of HIV/AIDS, in which virus and sexual transmission are central features. During contacts between health workers and patients their narratives come face to face. Communication is an important determinant of the quality of care. Secrecy and narratives are useful concepts again.
Arnma shared not everything she told me with the members of the home-based care team.
Me. Can you talk to the hospital people about your problems?
Amma. They just come here and talk to me and then they go.
Me. Why don't you tell them about your problems?
Amma. Well, they are not family. If they ask me something, I try to give them an answer. But I do not go there to tell them about a problem which is disturbing me.
Usually confidentiality, i.e. professional secrecy, is the rule for health workers who are involved in caring for people living with HIV/AIDS. In Amma's case, this rule was broken: Kate told Adwoa that Amma and Edward were HIV-positive when she disclosed her other daughter's condition, because she was dying. She and her colleagues had hoped that this action would have promoted openness about HIV/AIDS in this family, but it had not The team members felt uncomfortable about it. Instead of improving the situation, as they had hoped, disclosing that Amma and Edward were infected with HIV had probably deteriorated
According to the team members, secrecy was detrimental to the health of people living with HIV/AIDS and the people around them. It was their opinion that in order to cope with the sickness successfully, people needed to disclose their HIV-status. If they did not do so,
they could not protect others from getting infected and were more prone to the neglect of their own health problems. According to the members of the home-based care team, successful coping consisted in sharing the health worker's narrative.
Apart from the post-counselling session, Amma was not explicitly urged to speak up about her HIV-positive status anymore. Paul tried to persuade her mother, Adwoa, to let her
children know that she was aware of their condition, but she refused.
Paul and Kate tended to regard Amma's secrecy as an example of ignorance. They did not consider her very bright and felt that she had not fully understood the hospital diagnosis
and its consequences. Hers was not a case of deliberate denial, but she did not accept her condition either. The team members illustrated Amma's attitude by telling me how she reacted to the diagnosis, exclaiming: "O, I will go home and tell my mother that I have
'aydzj"'.
However, she did not do that. She did not tell Adwoa about the diagnosis. She might have known more about the sickness than she showed. She might have feared her mother's reaction, remembering what happened to her husband and maybe friends in Abidjan, where AIDS was endemic among the Ghanaian population. These are mere speculations, since the subject was never discussed with Amma.
The team members reacted to Amma's 'ignorance' by emphasizing the medical
consequences central to their own narrative: do not work too hard, do not have sex, come to the hospital when you or your baby is sick. They did not get into the reasons behind her behaviour. One could not blame them: they were health workers and very busy providing basic care.
The impact of secrecy and differing narratives on communication between health workers and their clients is the subject of chapter seven. Chapter eight, the final chapter, contains concluding remarks on the main themes (home care, secrecy, narratives and communication) and their implications for the fcasibil ity of home-based care.
2
The setting
Ghana's population
Ghana has 16,4 million inhabitants. Between 1980 and 1992 the population grew with 3.2% annually. The average life expectation at birth is 55 years for men and 57 for women; 55% of
the population is younger than 21 years, only 4% is older than 50.
The population is largely concentrated in the southern part of the country. Most people work in traditional agriculture, the biggest economic sector ( 50% of GNP and 61 % of the
working population). Approximately 40% of the people live in the cities. The GNP which dropped from US $600 per capita a year in 197 4 to less than US $200 in 1981 rose to US$415
in 1992.
Ghana is transforming its economic crisis, that reached its lowest point in 1983, into macro-economic prob>ress. The country undertook a macroeconomic adjustment program in 1995 supported by the International Monetary Fund in a three-year arrangement under the
Enhanced Structural Adjustment Facility (ESAF). The annual economic growth rose to 4.6% in 1996, inflation decreased from 71% in 1995 to 33% in 1996 and the average income of the population increased. The balance of payments improved. However, little changed for most Ghanaians.
The field research on which this thesis is based took place in the Ashanti Region, which is situated in the southern part of the country. I was there from May to November 1996. All research participants belonged to the Ashanti subgroup of the Akan ethnic group. The
Akan constitute 44% of all Ghanaians. About one third of all Akans are Ashanti. Ashanti generally speak Ashanti Twi, but can communicate with members of other Akan ethnicities.
I was based in a small town (2350 inhabitants) in Bosumtwe Atwima Kwanwoma district. The district was just south of the city district ofKumasi. Many of the approximately 130 thousand inhabitants of the district visited the city more than once a week to buy or sell
things.
Since the hospital's home-based care project for people living with HIV/ AIDS crossed the borders of the district, my research did so too. People were visited in districts south and
south-west from the regional capital of Kurnasi. Visited people lived in communities varying in number of inhabitants from two hundred to almost six thousand. Their distance to the
hospital, which was in the town where I stayed, varied from one to 40 kilometres. In the rainy season, several roads were hardly passable.
The health care system
Western health care was introduced in Ghana in colonial times. The colonial health system had a strong curative and urban bias, favouring the southern part of Ghana. It was very centralised and subordinated traditional medicine to biomedicine (Senah 1989: 245-248).
After the decolonisation, health care facilities were expanded at first, but economic and political problems resulted in the deterioration of the public health system. Professionals fled the country due to the economic crisis in the seventies and eighties (Senah 1989: 248-257).
Towards the end of the seventies, a new system of health care was introduced world-wide. It was a reaction to the cost-intensive, curative and elitary health care that existed in many countries. In 1977 Primary Health Care (PHC) was also introduced in Ghana. The new
policy aimed at low-cost comprehensive health care, community participation, prevention and treatment of common diseases and injuries.
Ghana's PHC programme is implemented at three levels: community, health institution (clinic, hospital) and district. Supervision lies with the regional and national Ministry of Health. The districts are supposed to be linked with and backed up by the regional and national Ministry of Health. Missionary health care services, which form about a quarter of the total health services, are also part of PHC.
In Ghana, the difference between the health care available in cities and the country-side is large. Furthermore, a disproportionate share of the health care budget goes to hospitals 11 at the expense of basic health services and community-based health care (Pinxten
1987: 14-15; Ventevogcl 1996: 8).
In my research area, which was about 900 km2, there was a catholic district hospital. Other health facilities in the area included a general and a muslim hospital, a Seventh Day Adventist's clinic, four catholic clinics and three Methodist and several community clinics and health posts from the Ministry of Health.
11
The HIV I AIDS situation
Africa has been the continent worst afflicted by HIV and AIDS. Over two million people are said to have become ill by AIDS by early 1994 and the cumulative total of infections is about
nine million (WHO 1994: 19). East and Southern Africa are most heavily hit, but West Africa has not kept out of harm's way.
In the mid-eighties the first AIDS-cases were diagnosed in Ghana. In the first years,
85% of the people with AIDS were female. 89% of the people with AIDS had ever lived in another country than Ghana, most of them in Cote d'Ivoire. It was believed that almost all infected women had been prostitutes outside Ghana. Relatively many of them were said to
belong to the Krobo people in the south--eastem comer of the Eastern Region (,,.A~narfi 1993;
Hampton 1991; Neequaye 1988).
In 1995 the male:female ratio of people with AIDS was 1: l. 7 and only 56% of the people with AIDS had ever lived outside Ghana in 1990 (Anarfi 1993; Asamoah-Odei et al. 1995: 26). Almost 90% of all cases are adults between 20 and 49 years old. AIDS cases have been reported from all parts of the country. Over 50 % of the almost 15000 cases reported by the end of 1994 had been reported from the Ashanti and the Eastern Region.
Presently the Ashanti region, where I carried out my research, is the worst afflicted by
AIDS. With around 13% of the national population it had 34% of the AIDS cases in the country in 1992 (WHO Ghana 1994: 3). The number of AIDS cases in the region is rapidly increasing. That is not only the result of previous behaviour of the inhabitants of the region, but also of the presence of the Komfo Anokye Teaching Hospital, the second biggest hospital in the country in Kumasi. The hospital has a reputation concerning AIDS care and attracts
people from other regions and even other countries. Furthermore, many centres in the region are screening for HIV and the system for record-keeping is very good (Philip Ampofo, Ministry of Health, Kumasi: personal conversation). In the district where I stayed, 411
HIV-positive persons have been registered between January 1992 and October 1995. Of those 169 were male and 242 female, a ratio of I: 1.4.
In mid 1994 the Ghanaian national authorities reported I l ,629 cases of AIDS to the World Health Organization. However, the National AIDS Control Programme stated that at the end of 1993 approximately 12,600 cases were registered. Recently a total of 40,000 AIDS cases and 400,000 cases of HIV-positivity have been estimated with a prevalence rate of
around4% (Asamoah-Odei et al. 1995: 1-7). The National AIDS Control Programme assumes
that 20% of the AIDS patients in urban areas and 10% in rural areas are hospitalised
(Asamoah-Odei et al. 1995: 26).
The projections are that the national prevalence will rise to around 8% in 2005 and
remain more or less stable until 2010. By then, over a million Ghanaians are expected to be
HIV-positive (Asamoah-Odei et al. 1995: 1-7).
The Ghanaian government initiated an AIDS Control Programme in 1986 and since
1987 there is a full-time National AIDS Programme Manager. A National AIDS Committee
was established in 1990 (Ministry of Health 1993: 6; WHO 1994: 110). The AIDS Control
Programme has focused on education of the general public and some specific target groups
(commercial sex workers, militar; personnel, long distance truck drivers), at the screening of
blood for blood transfusions and at the management of AIDS patients.
Educational campaigns and counselling services cover the central as well as the
regional and district level. Kumasi, the capital of the Ashanti region, accommodates a
regional office of the Ministry of Health, which includes a department for AIDS activities.
Collaboration between the Ministry of Health, other ministries and non-governmental
organisations is pursued on national and lower levels. All activities are largely supported by
donors. Future planning aims at the intensification of existing activities, with special attention
on increasing awareness about the disease and promoting safe sex including the use of
condoms (Minist1y ofHeaith 1993: 6; Vv'HO Ghana 1994: 3).
The Kumasi AIDS prevention project
The Ashanti Region is subdivided into eighteen districts. Most of them have their own hospital. The region has four catholic mission hospitals, one Presbyterian and ten government
district hospitals. Presently, there are nineteen health institutions where people are tested for HIV in the Ashanti Region. One of these is private, and is in Kumasi. Most test centres are in
mission hospitals or other religiously affiliated health institutions, and the rest is in
government health institutions.
Until 1995, the geogrnphical and political unit of the Ashanti Region corresponded
with the Catholic Diocese of Kumasi, which was then divided into three dioceses: Kumasi,
Prevention Project (KAPP), in which the four catholic hospitals participated. The project,
which included the first home-based care project for people living with HIV/AIDS in the
region, was funded by a NGO, the Catholic Relief Services (CRS) and started in August 1992.
In August 1995 the programme was concluded with a final review meeting. One year later a
final evaluation of the programme was done. Depending upon the results of this evaluation,
the programme might be continued. The KAPP was co-ordinated from the district hospital in
the town where I stayed.
There are seventeen catholic health institutions (including clinics) in the former
Kumasi Diocese, which together serve 576 communities. Institutions that were involved in
the Diocesan Primary Health Care (PHC) program covered 319 rural communities. The target
of the KAPP was to reach 80% of these communities with education. This goal has been
attained. Most communities have however been visited only once, but several, twice or thrice.
During the KAPP 7689 people have been screened for HIV for diagnosis and 4 756 for
transfusion. In the four hospitals about 1400 people were tested positive for HJV during the
era of the KAPP. One tenth was tested before giving blood for transfusion, the others were
tested for HIV in connection with symptoms. Almost 300 people were counselled, i.e. they
were told the test results and infonned about the implications12. Of those, 163 people were
visited in their homes afterwards.
In every hospital, two or more counsellors formed a home-based care team, which
visited people living with HIV/AIDS in their homes. The teams had the task to provide people
with basic medical care, counselling and spiritual support. They also provided financial
support where possible. Due to their limited resources, this proved difficult in most cases.
In the hospital where all my research participants were tested and counselled, monthly
HIV screening reports were kept from January 1993. Counselling started in September 1993.
fnitially, reports on every counselled person were maintained and kept up to date with
information from home visits, but this was not done any longer when l was around. The last remarks in the reports were added at the end of 1995, soon after the end of the official
programme.
In early 1994 a home-based care team from that hospital made its first visits to people
living with HIV/AIDS. The hospital employed 95 people, including 40 nursing staff and 3
12
[n only one of the four hospitals, which was actually a health post, all 1-!IV-positive people were counselled They tested relatively li1tle people and thus had a small amount of HIV-positives, who were all tested because of symptoms (no asymptomatic blood-donors were tested positive)
doctors. The home-based care team varied in size and composition. During my stay, it had
four members, but only two were active. These were a nurse, Kate (p.n. 21) and the Primary
Health Care co-ordinator, Paul (p.n. 20), who also did medical consultations. All former
members of the team were hospital employees.
About 1850 people were tested for HIV in this hospital during the KAPP13. Out of the 365 people who tested positive, 91 were counselled and 56 were visited by the home-based
care team. Out of those visited, 23 had died by October 1995. 33 people were still visited at
that time. When the team started with the home visits, they often met the message that the
person they wanted to visit had died. This was reported in 45 cases, but it is likely that more
people had died. During the research period, the team visited 38 people. Five of them died
during this period. Between the end of the programme in August 1995 and August 1996, at
least 20 new people are reported to have been counselled.
Before the KAPP, the hospital already registered people with HIV/AIDS. This was
systematically done from 1991. I also found some incidental remarks about people who were
suspected of having AIDS in the hospital in 1990. In 1989 the first patient with AIDS was
admitted to the hospital.
This team visited most people several times, but only spent a short time with each
person. Over ten communities were visited each home visit. Other teams in the programme
visited fewer people, but saw them more often and longer. The approach of the other teams
was comparable to the team that visited my research participants. Reasons why a counselled
person was not visited varied: he might not want to be visited, lived too far away or in Kumasi
or could not be traced by the team.
I went with the team on all home visits during the research period, which was ten
times. Every patient was visited once a month. The care that was provided mainly consisted
of the supply of medicines. Some people were also regularly given small amounts of money.
Counselling was never explicit about the sickness. Usually, symptoms were discussed and
sometimes social and economic consequences of being sick. Unlike one of the other teams in
the programme, the team members did not pray with patients during visits. Visits usually lasted two to ten minutes. In reports on the KAPP, the home-based care component of this
u Compared to the other three testing institutions this hospital has tested the least donors and patients The amounts of tests done depend on laboratory size, availability of equipment and staff, population of the catchment area and proximity of other testing facilities
hospital is said to be very successful. The main reason for this seems to be that they have been
able to provide some patients with funds for trading14.
Initially, the team did not just visit people living with HIV/AIDS, but also others, like new mothers or people who underwent surgery. This was done to avoid stigmatisation. Due to lack of time and money, this strategy was not followed anymore when I was around.
Occasionally, TB patients were visited, but this was a personal initiative of the Primary Health Care Co-ordinator, who had a special interest in TB.
In the KAPP, strict confidentiality was the rule. Essentially nobody but the patient and
the team members knew about the diagnosis. When on a home visit relatives or household members were around, the team did its best not to raise suspicion, unless they felt that the relatives already knew what was wrong or they found it necessary for relatives to know, i.e. when their health was endangered.
Hospital cars were used for home visits. One of those cars had AIDS prevention posters on it. Moreover, the same team members who made the home visits also came to the communities with posters and videos on AIDS prevention. It is therefore quite likely that they were associated with HIV/AIDS.
In review meetings the teams discussed problems encountered in implementing the KAPP. Major problems were irregular supply of reagents15, lack of (motivated) staff, poor
pre-test counselling and lack of integration of the programme in primary health care or normal hospital activities. Pre-test counselling was considered very important in view of the possibilities for successful counselling of HIV-positive people. During a meeting the plan was expressed to employ a social worker especially for counselling. This has not been done. The staff problem was felt to be due to the lack of (financial) incentives for people involved in the
programme.
1
·1 I have heard of only three women who have been given a loan for trade. Two of them were research
participants. Both had not been able to stari a succesful business and were still in debt with the hospital. 15
For example, during the last two months of 1995 and the first two months of J 996 no people could be tested in the hospital in my area due to lack of reagents.
The research participants16
Of the 1249 people who tested positive in the whole Kumasi AIDS Prevention Project, 783 were women and 466 men with a male to female ratio of 1: l. 7. Of the 411 HIV-positive people tested in the district hospital where I was based, 169 were male and 242 female, a ratio
of 1: 1 .4. The team that introduced me to my research participants had visited 42 women and 14 men. Amongst the sixteen people that I followed intensively, 11 were women and 5 were men.
Most HIV-positive people, in the region, the programme and in the district as well, were between 16 and 45 years old. Most people visited by this particular team were in their thirties, but some were remarkabiy younger or oider. I know of at least ten women younger than 25 visited by the team. Men were largely found in the older age categories, mainly between 30 and 45. The sixteen participants in my research varied in age from 23 to 70. Three women were in their twenties, five women and one man were between 30 and 40 years old,
two women and three men were between 40 and 50, one woman was almost 60 and one man was about 70 years old.
Out of the sixteen participants, eight were currently married, among which was one couple, whose story will be told in chapter five. This couple was still married, but separated. Of the other married people, only three lived with their spouses. One woman lived with her husband and his family. Two men, both in a polygamous marriage, lived with their two wives and their children and in one case several grandchildren. Five people were divorced,
including two men. Four of the presently married people had been divorced before. Two women were widowed. One of them had also been divorced and was now planning to get married again. Only one woman in the sample had never been married.
The people who did not live with a spouse resided with people from their abusua, i.e. relatives in their mother's line17. In most cases these consisted of the mother, siblings and sometimes mother's siblings and their children. One woman lived only with three of her children, after moving out from the family house due to problems. Another one lived together with her children along with her widowed mother and sisters and with her late father's other
1
'' In the next chapter I will deal with the selection of research participants. This paragraph shows some characteristics of those who were eventually selected and the groups they were selected from. In the Appendix there is a list of all main research participants.
17
