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Care Renewal

Social pathways from the HIV/AIDS deadlock of disease, denial and desperation in rural Malawi

Deborah Fahy Bryceson, Consultant
Jodie Fonseca, CARE Malawi
John Kadzandira, Centre for Social Research, University of Malawi

May 2004

Posted with the permission of Michael Drinkwater, Care (Johannesburg office)
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Executive Summary

Purpose of Study

This study was commissioned by CARE Malawi to explore the livelihood strategies and social forms that have evolved within rural households and communities to contend with the threat of HIV/AIDS. Both qualitative and quantitative research methods were used in three village sites in Lilongwe rural district to study recent social change. The aim was to identify points of opportunity for nurturing social pathways that could propel rural communities towards future well-being.

This report traces community responses to the three main stages of the HIV/AIDS disease cycle: 1) infection and transmission; 2) debility and death; and 3) the aftermath of death encompassing widows, orphans and household reconstitution.

Study Findings
HIV Prevalence

  1. While uterine transmission of HIV from mother to child is increasing in rural Malawi, the major form of transmission continues to be heterosexual sex. The tragedy of this situation is that sex has been transformed from being a natural and pleasurable part of everyday rural life, bringing birth and renewal to the community, to its current status as a conveyor of disease and death.

  2. The gap between urban and rural HIV prevalence narrowed during the 1990s from a factor of five to a factor of two. The absolute number of rural dwellers who are HIV positive outnumbers urban HIV carriers by roughly three to one.

  3. The denial and fatalism prevailing in rural Malawi holds back the adoption of safer sexual practices and perpetuates a high-risk environment in which many people, especially youth, are contracting HIV/AIDS unnecessarily.
Kinship Structure

  1. The Central Region, where the study took place, has a large Chewa population representing a mosaic of matrilineal and patrilineal people. Exogamy is practiced which obliges men and women to marry someone from outside of their birth locality to avoid marrying a close relation. Even though the incoming spouse is usually from the region, s/he will always be a 'stranger' in the locality of the marital home. In the event of divorce or widowhood, s/he is expected to leave the village and return to his/her home area.
Rural Livelihoods

  1. Farming households' earnings from agricultural exports and remittances declined during the 1990s, engendering rural income diversification, deagrarianization and depeasantization. The famine of 2001-02 and the on-going HIV/AIDS epidemic have been intricately embedded in these processes.

  2. Over the past five years during the famine and its aftermath, ganyu casual labour has gained in importance as a source of income for all economically active household members, particularly women and youth.

  3. Alcohol production notably of kachasu and masese has been a mainstay of rural women's earnings. The shortage of grain during famine reduced women's earnings from alcohol production. The widely reported cases of women and girls exchanging sex for basic foodstuffs took place in the context of having nothing else to offer in exchange. They were reduced to transacting an 'essential exchange' in all respects: sex for basic food needs.

  4. The removal of subsidized fertilizer loans to farmers continues to trouble villagers a decade after their removal. Yields of both food and cash crops have declined and many men and women list the lack of fertilizers as a major problem, along with the declining marketing services of ADMARC.
Sexual Behaviour

  1. Children begin to be sexually active at the age of 10 or 11 years. Adolescents vary in their attitude to condoms, but a large proportion do not use condoms on the basis of misinformation and fear of physical harm or immorality. Different media messages are prescribing conflicting sexual behavioural guidelines.

  2. In village focus group discussions, villagers felt that sexual relations had not altered in accordance with media messages advocating disease prevention. Many stated a preference for 'skin-to-skin' sex or trusting their marital partner rather than using a condom. Fatalism prevailed in which people felt that they had no capability to control the disease. They identified three main tendencies which continued to spread the disease: village extra marital sex, women's increasing transactional sex and men's drinking and womanizing leisure time activities.

  3. Extra-marital sex is a well-established accompaniment to drinking. Serious drinking and womanizing often takes place in the drinking establishments of the market town or some other major population settlement. Youth are increasingly amongst the ranks of heavy drinkers.

  4. Traditionally, sexual behaviour was proscribed throughout one's lifetime on the basis of gender and age and these norms were embedded in concepts of community harmony and well-being. Chiefs as ritual leaders and spiritual heads of the community safeguarded sexual morality. The role of the traditional leadership is now crucial to changing sexual attitudes and practices. Enforcement of sexual taboos has been largely in their hands.
AIDS-afflicted Households and Support Services

  1. Families with AIDS sufferers try to hide the fact under the guise of TB, malaria or some other chronic ailment for fear of shame and ostracization. Villagers do not question these alibis and tend not to help the family unless they are the immediate relations of the patient.

  2. Our evidence suggests that rural medical practitioners tend to refrain from telling patients that they have AIDS based on the obvious clinical symptoms that their patients present. Instead the medical personnel advise the patient to visit a testing centre because of the sensitivity of the inter-personal situation. Patients are generally loath to go because it is usually distant from their homes and they are fearful of the outcome. They seek other health options nearer their homes, which can nonetheless be quite costly. Asset-stripping to cover medical costs impoverishes rural households.

  3. More than half the population identify Gule Wamkulu as a traditional loyalty and for some as their main religion. Prophetic spirit healing has become a significant force in the rural areas as well over the past century. Rural people's search for medical care is apportioned between traditional healers, spirit healers and western medical facilities. Evidence suggests that the medical practitioners and healers themselves engage in cross-referral across these different medical systems. Traditional and spirit healing is directed at the remedial reworking of the patient's social relations to attain spiritual balance. 'Well-being' in this sense is spiritual and relational rather than physical or psychological.

  4. There is great uneasiness about AIDS patients in the village community. People identify with them at the same time as they are uncomfortable and fearful about them. Village Action Committees1 have made important contributions to AIDS care, providing much needed practical support and helping to alleviate the feeling of shame that AIDS-affected families experience. They also provided forums for open discussion of the behavioral causes of AIDS.
Aftermath of Death and Household Reconstitution

  1. While villagers are reluctant to offer help to AIDS-affected households, their whole-hearted presence and assistance at funerals is an unwavering tradition. To stay away from a funeral would be to disassociate oneself from the community. Bereaved households incur onerous expenses connected with the funerals. Village leaders have tried to mitigate this through encouraging people's involvement in funeral committees that involve annual contributions in cash or kind.

  2. In the aftermath of death, families may experience dislocation in terms of the return of an 'incoming' spouse to his/her home village vis-а-vis matrilineality or patrilineality. Since the deaths so far seem to have been biased towards men, it is widows under patrilineality who have been most affected. Not all have returned to their home area, but those who have stayed tend to experience restricted access to the assets of their conjugal homes due to the intervention of their brothers-in-law. This can detrimentally impact on their welfare and that of their children.

  3. Twenty-six per cent of our random sample of 141 households was hosting one or more orphans. This amounts to .53 orphans per family on average or 1.79 orphans per orphan-keeping households. The 68 orphans were divided equally between boys and girls. Most were under 10 years of age, with a noticeable dip in the proportion of girl orphans over 15 years of age that may be related to their tendency to marry early. The allocation of orphans to host households depends on extended family arrangements in the first instance, the intervention of the village leadership, or the orphan who seeks refuge in a household where he/she feels accepted.

  4. With the increasing incidence of morbidity, mortality and orphanhood over the past decade, households are being reshuffled in size and composition, causing a fundamental re-ordering of household and village life. Matrilineal female-headed households are the most likely household type to take in orphans.

  5. Some orphans are marginalized within the host family and suffer from very low self-esteem. They may seek escape from what they consider a life with little future. Boys drop out of school to do ganyu whereas girls marry early.

  6. The presence of orphans imposes financial costs on the host family. Our survey revealed that roughly 55 per cent of orphans were attending school with girls (70 per cent) predominating over boys (40 per cent).
Community Economic, Social and Political Restructuring

  1. Given the debilitating effects of HIV/AIDS on the village community and the recent experience of famine, the timeframe of villagers' coping strategies has been drastically reduced. Our survey findings indicate that only 15 per cent of households received assistance during the recent famine in the form of food from extended family and only 19 per cent accessed food aid from external agencies. Many now operate on the day-to-day resolution of household hunger through 'kusokola', looking for food.

  2. Besides increasing reliance on ganyu labour markets, land markets are appearing in which the local rural people are heavily handicapped given their lack of literacy and numeracy. Male farmers have recently been seeking urban or other patrons to help finance their access to fertilizers and land rentals and sharecropping arrangements have ensued.

  3. As the number of distressed households has increased, village community interaction has suffered. Theft has become a major problem and inter-household relations are strained when loan repayment is outstanding, as has been common since the famine.

  4. Three types of community organizations operate within villages: 1) locally-initiated organization directed at addressing security problems, death and recreational pursuits such as sports; 2) externally-funded, community-based organizations in which the village headman is almost invariably the intermediary who receives funds or materials and distributes and ensures their usage according to the specifications of the donor; and 3) outward-directed informal associational ties especially important in encouraging inter-village ties. In the first type, resource mobilization is limited except in the case of the funeral committee, where the headman provides the authority and security to mobilize goods, services and cash for funeral committees. The externally funded community-based organizations have proliferated over the last decade as foreign aid in Malawi has increased. Donor-instigated associations are seen to be short-term by nature and villagers feel that there is little purpose in continuing the committees associated with these projects in the absence of external material support.

  5. Local leadership has been in a transitional situation that has become increasingly problematic over the last decade, as their administrative work has been extended to the demands of numerous foreign donor agencies and NGOS who have instigated village-level aid projects. Many have very poor educational backgrounds and lack the requisite administrative skills. Traditional leaders are being pulled in two different directions. They attempt to fulfill their age-old function as ritual leaders and moral guardians of the community and as heads of chiefly families. Traditional practices may call for preferential treatment and favouritism in the channeling of goods or services that is at odds with traditional leaders' bureaucratic accountability stipulated by the national government and multi-various donor agencies.
The Future

  1. The rural youth of Malawi today face unprecedented challenges. They are the first generation in Malawi's history to be availed free primary education, thus they are already better educated than their parents. In addition to attending school, they are also working for cash incomes and demanding that they have control over their earnings. Familial work cooperation is in decline and teenage estrangement is surfacing. The death of a parent to AIDS catapults many of them into premature adulthood. Youth, more than any others within the village, appear to be part of a lottery in which their life chances are determined irrespective of their actions in a period of great unpredictability.

  1. Rural reform needs to address political and economic realms notably:

    1. the separation of political, economic, cultural and religious roles of village leadership and creation of checks and balances between them,
    2. the democratic election of local government leaders,
    3. education of farmers in relation to land rights, and
    4. re-instatement of fertilizer loans on a trial basis for 5 years.

  2. There is need in AIDS prevention, patient care and the handling of the aftermath of an increasing volume of AIDS deaths to:

    1. understand the forces propelling the rural incidence of HIV/AIDS and address it on its own terms rather than as an offshoot of the urban-based experience of AIDS.
    2. continue to give priority to rural household food security to prevent household asset stripping and the further lowering of the bargaining position of villagers in casual labour negotiations.
    3. license and tax local alcohol production and identify alternative forms of income for alcohol producers and alternative forms of entertainment for those who otherwise become entwined in a heavy drinking culture with increased risk of exposure to HIV infection.
    4. encourage more dialogue between medical service providers and traditional healers and Pentecostal spiritual healers to explore how individual and community agency in the prevention of AIDS can be better accommodated in government health messages.
    5. develop media messages beamed at the rural population which begin with the assumption that individual health depends on broader social community harmony, emphasizing that harmony and well-being depends on each and every person taking the responsibility to have safe sex with condoms or no sex at all.
    6. facilitate the spread of the 'positive living' approach encouraging dietary awareness. This could be usefully expanded in the context of the existing general view in villages that the duration of time AIDS sufferers manage to stay alive depends on both the quantity and quality of food intake.
    7. conduct research on VCT in the rural areas, taking account of the existing role of counselling performed by traditional and spiritual healers. This could facilitate the design of a rural counselling program that is conducive to the realities of rural medical staffing and villagers' attitudinal beliefs related to disease.
    8. enlist schools to take a more active part in orphan welfare by discretely reporting cases of orphan neglect or abuse to the village headmen and VAC as well as facilitating out-of-school work opportunities.
    9. mount a 'choosing to live or die' media campaign in which rural people of both genders and all ages are left in no doubt that ultimately their sexual behaviour determines whether they live or die as individuals and as communities.

  1. "Action" is used in some areas as a euphemistic substitute for "AIDS".

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