The WHO defines Community and Home Based Care (CHBC) as any form of care given to sick people in their homes, which includes physical, psychosocial, palliative, and spiritual activities (Ncama, 2005). The continuation of the HIV/AIDS crisis has led a switch in the focus of development policy from a situation of managing hospital cases to care giving and support in homes or community the world over. According to Spier and Edwards (in Ncama, 2005) home care programs for people living with HIV/AIDS (PLHAs) were mainly initiated in North America and Europe in the late 1980s. In Malawi AIDS cases receive care from their households, members of the extended family and the wider community who sometimes work as an organized CHBC.
The idea of CHBC appears to have been documented around the mid 1990s in Malawi as the signs of getting overwhelmed by the burden of HIV/AIDS began to show in the government hospitals and the need for alternative strategies was becoming evident. It is not clear who was responsible for the first CHBC initiatives in Malawi, however it is known that NGOs such as the Light House at the Lilongwe Central Hospital and other Community Based Organizations were instrumental to the conceptualization and development of the idea. The idea has evolved through counseling, teaching of approaches to care and support and making ARVs accessible to members who operate within their communities. Concerted efforts involving donors, NGOs, Government of Malawi, Community Based Organizations (CBOs) and Faith Based Organizations (FBOs) led to the widespread evolution of the CHBC dimension in the national response to HIV/AIDS in Malawi.
In 2002 the Malawi National AIDS Commission documented that care and support for AIDS sufferers had been on the decline particularly due to the worsening condition of poverty in the country in recent years. The HIV/AIDS pandemic undermined socio- cultural structures making it difficult for families and traditional institutions to cope. This problem is compounded by the inequitable distribution of gender roles in African society, where sourcing of food and direct care for the sick is largely a responsibility for women.
It, therefore, becomes apparent that the current system of health care and support is immensely constrained and unsustainable, and hence worth serious investigation.
The specific policy statement for CHBC is said to be; to promote the delivery of quality CHBC as an essential component on the continuum of care for PLHAs (NAC, 2003:10). At the moment the promotion is mainly done through the practice of capacity building in Community and Home Based Care in the form of small grants that groups of caregivers receive from the NAC. The proliferation of orphan care centers has taken center stage over the years mainly because communities are left with children that have no where to turn to when their households go through dissolution. It is not known what it costs to run these care centers at the moment, let alone how well they are performing since no known evaluation of the institutions has come to the fore. One can almost conclude that the emerging picture is one where orphan care is more of a community problem while caring for the sick is largely a specific household matter. Other forms of interventions to foster the needs arising from the effects of the disease include, but are not limited to, work by NGOs and CBOs and some specific projects in Malawi such as Project Hope and Care Malawi. However, with specific reference to these highly influential NGOs, their work is limited by geographical bias because they are not evenly distributed by both their physical location and programme operations. This bias is compounded by the fact that most of the NGOs do not have HIV/AIDS as their core business and the immediate effect of this is that there will be varied degrees of focus on AIDS activities.
As a strategy in the plan, Community and Home Based Care features as an important component of HIV/AIDS Management in the overall National Strategic Framework (NSF) developed and coordinated by the NAC. Major actions under home based care include; (i) developing positive attitudes among clinicians and home based care providers, (ii) ensuring availability of drugs and other facilities, (iii) building capacity for hospital care and for home based caregivers and health care givers in coordination of their services, and (iv) reviewing the home based care guidelines and clinical management, among others (NAC, 2003:10).
At household level where the bulk of ministering to the sick takes place home based care is largely a responsibility of women who look after the sick members. They are responsible for feeding and general sanitary needs. Documented types of care include providing funds for buying medicines, food and other essential needs. These needs are funded through decumulation of assets or doing piece work (ganyu) and the burden is bigger for households headed by women and/or where the bread winner is not in formal employment or in stable business (Munthali, 1998:7). Take note that the general form the care takes depends on the nature and conditions of the household.
Because of the many dimensions to, and the complicated nature of the notion of Community and Home Based Care, that is backward and forward linkages to measures of poverty, agricultural productivity and production, exchange markets, employment; infrastructure among several key dimensions, a clear and well integrated plan of CHBC is a necessity. The development and conceptualization of the NSF for HIV/AIDS was done independently of the Community Social Action Matrix of the Poverty Reduction Strategy. The implication is that there is a clear need of a systematic integration of the two strategies.
1.5 Statement of the Problem
In concert with international evidence, research conducted in Malawi by Munthali (1998:7-8) reveals that household impact of AIDS was being felt at various levels. For instance, AIDS affected agricultural production and earnings. In Zambia Serpell (1999) showed that two-thirds of families with paternal death experienced an 80% reduction in income while in Zimbabwe research by Stover and Bollinger (1999) reported that AIDS deaths were associated with up to 61 % reduction in maize production due to reallocation of labor and land resources. One of the implications of the AIDS pandemic is that changes in household consumption and investment behavior have become a necessary way to cope. In Tanzania following death of an adult, household expenditure dropped by 11 % while for the poorer half of the population food expenditure fell by 32 and consumption by 15 % (Over et al., 1995). In Malawi 43% of households were reported to
spend more than five hours per day caring for the sick members of their families, clearly this has a corresponding impact on food production and consumption (Arrehag, 2006). Clearly, the conditions associated with HIV/AIDS have social consequences on the households concerned, especially changes in household health and composition. While illness may lead to a reduction in health maintaining activities, loss of a bread winner may result in dissolution of an entire household. In Zambia, for urban families with paternal death, 61 % moved to cheaper housing, 39 % lost piped water, while 21% and 17 % of girls and boys respectively, dropped out of school (Serpell, 1999). Lastly, in Malawi there were psychological costs, especially social stigma, grief and uncertainty about the future among caregivers and survivors (Munthali, 1998) and vacancy levels were reported to have risen up to 58% between 1990 and 2000 in the education sector alone (UNDP, 2002). All these indicators signal how difficult it is for households and communities to cope and respond to the pressures created by HIV and AIDS.
On account of the complicated situation, households find themselves in partnerships that emerge to make an impact on the HIV/AIDS pandemic. For example, the NAC and other NGOs enter into relationships with the community groups by making available some grants for income generating purposes. While the idea of IGAs is an important step towards addressing the needs for CHBC, the process of acquiring these grants is mired with procedural bottlenecks which render them relatively inaccessible to the rural poor. Secondly, these interventions have resulted in multiple organizations descending on these communities to work with the villagers. One of the implications of this development is that, differential working methods and standards are passed on to the communities and in the process alter how they conduct themselves. The inter-relations involve making critical decisions such as planning for activities, resource allocations and accounting for externally injected resources. Relating with numerous partners whose nature and methods are varied can be a source of frictions that have a bearing on the way the CHBCs perform. It is on the basis of these aspects, the communities’ own difficult conditions to cope with the HIV/AIDS demands and the growing influence emerging from the multiple partnerships, that this institutional evaluation research is conceived.
1.6 The need for an Institutional Analysis Evaluation
There is growing evidence of governments which fail to provide adequate health care to their citizens. On the other hand there is acknowledgment of the NGO sector playing a key role in filling the gap albeit with efforts that are not as evenly spread as those of the public sector. The resultant advent of significant out-of-pocket costs associated with the failures of formal health services impact particularly on the poor on two fronts. First is that the government has the responsibility to provide the social amenities such as health care to the poor, so if this does not happen there is need to understand why. Secondly, in a country like Malawi where health care is supposed to be free, paying for health care must be seen as a negative signal because it entails huge opportunity costs on the part of the households. For example, households tend to prioritize food security year in year out, so diverting cash to pay medical bills indicates government policy failure that needs to be explored.
The need to find ways of facilitating the communities’ agency, such as the CHBCs, is underscored by two factors. First, the communities are known to be struggling with the adopted critical roles of administering health care services at home. This is done within the difficult economic conditions they face and the need to support them has been clearly endorsed by international partners. Second is the observation in the New Institutional Economics that inter-relations in a complementary mode with the recipients of health services have side-effects of generating frictions. Frictions have their origins in the different capacities, interests and working methods between the formal and informal systems that are coming together. The inertia generated by the sticking points, which translate into transaction costs of that economic system, has implications for the overall performance of these organizations. Since the operational arrangements of the national response to the HIV/AIDS are structured in a governance mode, an institutional analysis type of evaluation reflecting the sources of the transaction costs faced by these organizations is warranted. It is thus envisaged that the following questions should be central to this evaluation.
How does the presence of external agents influence CHBCs? What transaction costs or economising transaction arrangements arise from relating with external organizations? How do these factors impact on the operating methods of the community based organizations? Are there new working methods adopted by the community agents to reduce transaction costs? Are there conflicts or tensions between working methods of the CHBC groups and their external partners that raise transaction costs? What resources and services do the actors bring to the care continuum? How are the perceptions and consequent working arrangements of the community actors altered by the partnerships? Are these alterations reducing or raising transaction costs of delivering care? What are the motivational factors generated by the framework? These questions are explored within the context of the New Institutional Economics, and in particular with respect to the concept of transaction costs that explain CHBCs conduct themselves the way they do.