INFORMAL
CARE OF AIDS PATIENTS:
THE
PLIGHT OF WOMEN IN ZAMBIA
Health care services in Zambia are not coping with the increasing care demands from ever escalating AIDS cases. In the absence of integrated community health care services, most of the people with AIDS have been left with not much choice but to suffer and waste away in their homes.
Most of the non-governmental home based care initiatives that came up to supplement formal care have collapsed due to lack of sustainability. The existing few are church driven with limited services and a scanty coverage. In the households, the burden of informal care giving is mostly on the women because caring is traditionally considered a woman’s role.
This article is based on study findings on the informal care of AIDS patients. The objectives of the study were to investigate the cultural dimension of the local women’s caring role; to identify, analyse and interpret experiences of the local women informal caregivers; and to explore the coping strategies of the local women informal caregivers.
The study was conducted based on an ethnographic theoretical framework. Two women informal caregivers to terminally ill AIDS patients were purposefully selected as research participants. Data was collected using audiotape recorded interviews and participant observations. Simple content analysis was used to describe, analyse and interpret data.
FINDINGS
Women more often than men take up the caring role in families. This is largely because they have no choice. The care giving role adds to the strain on the woman already loaded with multiple competing roles in the family. The gender-biased nature of care giving responsibilities in the households has further disempowered the already oppressed women. During long-term care giving, the women experience unspeakable physical exhaustion, mental strain, economic hardship, emotional and social deprivation.
At the time when formal health care services are failing to cope, community based home care initiatives collapsing, the women in the households have never failed or collapsed. They persevere, endure and brave the challenges of care giving even in conditions of severe poverty.
Yet their contribution to health care services is not recognised, acknowledged or valued by the government or the society. Paradoxically, the prejudiced and oppressed women are heavily relied upon for care giving responsibilities. However, the danger is that the experience of long-term care giving compromises their health, as usually said, a sick woman breeds a sick society.
THE CHURCH
The church has always based its teaching on the concept of filial piety, doing good to others to serve and please God. The findings of this study show that filial piety is often manipulated by the society and that it has contributed to the disempowerment of women informal care givers. Another very strong form of filial piety the church teaches is the “…for better for worse, in health and in sickness” vows for married couples.
Yet again the study findings indicate that these marital vows are seriously breached and have greatly contributed to the disempowerment of women.
One woman at a focus group meeting said: “…When they begin purging with diarrhoea and vomiting in bed, men badly need someone to look after them. Doing the washing of clothes soiled with faeces, bedpans and dressing them with nappies, it requires someone who really loves you and is highly committed. Who else but a wife, for the wife is bound by the marriage contract? For Christians, the marriage vows stipulate clearly that ‘they will abide to each other in sickness and in health, until death separates them’. Such men exploit this for their selfish ends”.
In view of this evidence, the church is not seen to be consolidating reinforcement of its teachings with adaptive or appropriate actions or behaviour. Therefore one can deduce that the church is unwittingly not adequately safeguarding the women from traditional injustices and prejudices.
The church using its great influence on people’s lives can contribute positively towards the empowerment of the women and enduring with informal care giving responsibilities in the households. Through the Basic Christian Communities which are points of accountability for Christians, the church can encourage and supervise the men to actively take part in the caring tasks as well as appreciate and value the contribution of the women towards health care services.
In the same way behavioural change towards filial piety that encompasses gender equity can be instituted, monitored and evaluated constantly. The Catholic Commission for Justice and Peace (CCJP) is also one of the many arms of the church that can help to alleviate the women from traditional injustices and prejudices. For it indeed “pleased God to choose the weak and shame the strong” (1 Corinthians 1:27).
THE COMMUNITY
The women expressed disappointment with the way society has manipulated the caring role in the households. The women suffer and endure with the heavy burden of caring for the sick alone. Most of the times relatives especially men do not help with the labour of care giving and the torment of witnessing someone about to die.
But as soon as the sick person dies, the caregiver becomes insignificant. The men quickly take up the responsibility of funeral arrangements. Sometimes they do not even consult the caregiver about the deceased person’s certain funeral or burial preferences.
In most cases they do not really respect the wishes of the dead. Then the women asked: "Why is it that men do not participate in the caring tasks of their suffering relative but find it most appealing to run the funeral arrangements of an emotionless body?
This issue can be described in relation to the work of Powell and Clarke (1976) quoted by Billington et al. (1992) who stated that a woman can hold any profession but culture will still see and describe her as a "mother". This indicates that the role of mother is paramount. In contrast men are rarely described by culture as "fathers", except to emphasize their role as breadwinners. However, the role of father is given a positive cultural meaning.
For example, in disaster reports like during floods in Mozambique, several men were reported as performing extraordinary acts of physical endurance in order to rescue their families from drowning.
Here the cultural representation of fatherhood is that of involving protectiveness, physical strength and bravery. To be brave in these circumstances was to be a man and worthy of fatherhood. In view of this description of a man and fatherhood the women asked: "Is neglecting caring tasks and conducting funeral arrangements an act of bravery? Or, is enduring long term care giving and witnessing someone about to die not an act of bravery?"
The women felt that there is so much constant and persistent bravery in motherhood. They cited childbirth and that the reference to the world, nations, ships, etc., as "she" indicates strength, protectiveness and bravery which are all embodied in the role of motherhood.
Pauline Shawa Chabinga
Christ the King Parish
Lusaka