The responses to the care needs of People Living with HIV/AIDS (PLHA) in highly affected and resource-constrained settings have been very diverse. Numerous enthusiastic small-scale projects with an holistic approach have been developed, while the already overburdened and fragile general health services continue with a "business as usual" approach because they have not yet coped with additional and new demands. Responses at national referral institutions often focus on externally funded clinical or epidemiological research projects more than resource-constrained service delivery development. Community responses have indeed been developed to meet particular social and prevention needs, while medical needs have not been met. A few, but increasing, number of programs in heavily affected countries have tried to respond to comprehensive care needs. These programs include clinical, psychosocial, and preventive interventions in an integral way and are covering a growing audience1,2,3.

Support required to meet AIDS care needs, either from national governments or international bodies, has been difficult to obtain and limited in financial terms. Indeed, care has never scored high on the priority list of national HIV/AIDS programs in the developing world because public resources for health have had to be spread so thin between competing public health needs. There was-and continues to be-a fear among donors and decision-makers that resources invested in AIDS care fall into a bottomless pit. Their commitment to funding care is limited by doubts that supporting supposedly fragile medical systems that are already overwhelmed by an increasing number of incurable AIDS patients would divert resources and attention away from HIV prevention or from more pressing care priorities, such as malaria or tuberculosis4. Only recently, through the overwhelming humanitarian need to provide care and the pressures from NGOs and people living with HIV in particular, is HIV care back on the donor agenda. Indeed, the need to involve people infected with HIV is seen and understood as critical in planning care programs. The dramatic result of antiretroviral drugs in settings with optimal care has generated national and international responses to address pricing and patent issues and although there are no real breakthroughs in pricing as yet, the emphasis on access to treatment as a right and a responsibility is being seen in rich and poor countries alike. This emphasis, if translated into greater access, will have consequences for the necessary care delivery systems to ensure safe and effective use of the drugs.

Because the number of comprehensive HIV/AIDS care programs is limited, monitoring and evaluating such a comprehensive approach has not yet been able to provide project implementers and donors with sufficient information on successes or failures. This chapter will look into the "what" and the "how" of HIV care monitoring and evaluation. Monitoring and evaluating care cover a very broad range, similar to that shown in Chapter 1, "Conceptual Approach and Framework for Monitoring and Evaluation," for prevention. In care, these levels of evaluation range from information collection about inputs, such as the infrastructure of care facilities, human capacity, staff attitudes, and socio-economic

context in which care is being delivered, to the activities of actual care delivery measured against acceptable standards of care, such as the proportion of attenders with an oral Candida infection offered HIV testing, to output information or immediate results of care activities, such as the number of people in need of palliative care receiving care from a family care provider.

Other outcomes are the end results of care for the individual, family, and community, such as reduced need to attend hospitals. Finally, impact information refers to the long-term effect of care on economic productivity, quality of life, and survival time. Although impact is important to understand, and there is certainly a need to look for cost-effective and sustainable options that link the effectiveness of care systems to the availability of resources, those broader economic and developmental issues are beyond the scope of this chapter, which is geared to practical care providers in the field. We will focus mainly on the inputs and outputs of service delivery programs and lay out a framework for determining the aspects of care that must be monitored to ensure the delivery of quality services.

Monitoring and evaluating HIV care and support is still new, and the development of effective monitoring tools and methodologies is in its early stages5. Recently, an international working group coordinated by UNAIDS, WHO, and the MEASURE evaluation project of the University of North Carolina issued a generic HIV monitoring and evaluation guide aimed at the national program level, which includes a set of proposed indicators for care. These indicators are designed to better guide National AIDS Program Managers and funding sources6. WHO is currently field-testing these indicators in five countries in Africa and Asia. However, there is increasing recognition that additional tools are necessary for monitoring and evaluating the ways in which HIV care activities are being implemented at the local level. An additional advantage of locally relevant monitoring and evaluation (M&E) is that it allows for self-monitoring. In that way, an opportunity for the implementing staff will be created to use monitoring and evaluation results directly to refine, adapt, and strengthen their activities.

The process of having those who implement care programs collect and analyze data and use the findings is slowly gaining general appreciation and is essential for improving service performance2,7,8. Such a participatory approach is in line with ongoing public service and health care reforms, which emphasize that decision-making, executive responsibilities, and accountability should be vested at implementing levels, for example, the district or the catchment area of a community-based non-governmental organization (NGO). Capacity building among care providers to monitor and evaluate will be a key requirement.

M&E Planning Step 1: Defining The Elements Of Comprehensive Hiv Care That Need To Be Evaluated

A Strategy for HIV and AIDS Care
Care programs should be developed with the active involvement of PLHA while also taking into account capacities and needs of the local health system. Several studies in developing countries have assessed and recently compiled the needs of PLHA and health care providers1. These needs form the basis of the essential care elements as follows:

• clinical management-providing early diagnosis, including HIV testing, rational treatment, and follow up care;
• nursing care-promoting and maintaining hygiene and nutrition, palliative care, home care and education to care providers at home and family, and promoting observance of universal precautions;
• counseling-providing psychosocial and spiritual support, including stress and anxiety reduction, risk reduction planning and enabling coping, accepting serostatus and disclosure to important others, positive living, and planning of the future for the family; and
• social support-providing welfare services, spiritual support, and legal advice; providing information and referrals to such services; and facilitating peer support.

The composition of and emphasis within such a comprehensive approach will change over time between the phase of suspicion of infection or early HIV-related illnesses and late stage disease. For example, when infection is suspected, emphasis will be on meeting anxiety needs through counseling, followed at a later stage by meeting clinical needs through managing opportunistic infections. At later stages of the disease, palliative care, combined with social support to ensure a future for the family, become the most pressing needs.

At any moment in time, however, providing the different elements of comprehensive care complement and even potentiate each other and if provided well will result in a better quality of life for affected people. Managing a clinical condition, for example, will be easier and better appreciated if worries about being infected and what will happen in the future can be dealt with through referral to a counselor and to services dealing with social or legal support.

For care to be comprehensive, it must comprise a wide range of support services1,9,10. These need not necessarily be provided by the same individual or institution but can be provided through networking in partnership with other services, institutions, or projects. Comprehensive care should also include timely referrals between home or community and the hospital and vice versa, effective discharge planning, and follow up at each level1.

The essence of "comprehensive care across a continuum" (Figure 7-1) provides a unique opportunity to respond to the wide range of medical, emotional, and social support needs of people living with HIV/AIDS and their families1,9,11. To enter a care continuum, a diagnosis has to be made in such a way that it allows further care seeking and support. Experience so far has shown that voluntary counseling and testing (VCT) sites at hospitals or clinics-or even free-standing sites-serve the purpose of helping people know about and accept their serostatus or diagnosis and learn where to go for care12. During the course of HIV illness, PLHA will have different needs, and care may need to be provided away from hospitals and closer to home or within the home. Team work and referral mechanisms will allow providers to offer a continuum of care and thus avoid parallel and isolated care efforts.

The principle of a care continuum, applicable to most if not all health issues, is particularly critical to HIV/AIDS for several reasons. First, HIV infection is a chronic state, which may extend over a long period of time if opportunistic infections are prevented or promptly treated. This situation requires that there be a strong synergy between various levels of the care systems, as some infections may be diagnosed and treated at the local level, while others may require effective referral to care institutions. Second, because of the ongoing fear and stigma associated with HIV infection, many people are forced to seek care far from home. This occurs despite the fact that optimal care involves access to care where it is most convenient and cost-effective, and where people benefiting from such care can pursue their professional and personal lives with minimum disruption and without fear. As a general rule, the farther a person has to travel from home to receive care the greater the personal cost (for example, economic cost of arranging travel time away from home and work and costs of time lost).

The various stages across the continuum are:

Home and Community Care
Self care requires skills in prevention and early presumption and treatment of some opportunistic infections and other conditions, such as diarrhea, headaches, or dermatosis. These skills may be acquired by the person living with HIV, and/or by his/her relatives or friends who may also provide needed social support. Peer support groups are very important in supporting PLHA and helping them update and exchange information on optimal self care and care seeking.

Self care may not always be possible or sufficient. Skilled health personnel, drawn from primary health care facilities or from the community itself, may be trained to provide such forms of care as palliative and nursing care. Some forms of home-based care will require that outreach programs be created. Mobility of care providers and the efficiency of communication will be essential ingredients in these programs. Other forms of home-based care will build on the strength of community support structures with trained volunteers supervised by the primary health care level. At the home level, social support is often provided by the community itself, with or without external help.

Primary Health Care
Depending on the strength of the national or regional health system and the private and traditional sector, primary care facilities may include clinics and pharmacies, traditional healers, health posts or dispensaries operated by health assistants, health centers managed by trained health care providers, or medically trained personnel, including clinical nurses and physicians. The human resources, skills, collaboration, equipment, supplies and other resources available at this level will determine the type and quality of services locally available, and the criteria for referral of patients to secondary or tertiary care levels.

Secondary Health Care
This typically includes a district or regional hospital (public, private, or non-profit), such as tuberculosis treatment centers, HIV clinics, VCT centers, rehabilitation centers, or social and welfare services. Often, NGOs run comprehensive health and social services either on their own or linked with public facilities. PLHA support groups often assist at these facilities. At this level, human resources, biomedical technology, and physical facilities are available to provide complex inpatient, outpatient, and social services. Inpatient facilities for terminal care for those who do not benefit from such support at home may be available at this level in separate units such as day care centers or hospices for the chronically ill.

Tertiary Health Care
Regional, national, or university hospitals (public or private) are expected to offer the highest level of care. This care is often provided by multidisciplinary teams and combined with research. Attendance at tertiary care facilities may evolve with the stage of maturity of the HIV/AIDS epidemic. Such facilities may see and admit most people diagnosed with HIV/AIDS at an early stage of the epidemic. A shift of care functions from tertiary facilities to other levels of the care continuum usually occurs as the epidemic matures, the patient load increases, skilled personnel are more widely available, and case management becomes more systematic. These facilities often have a research agenda in both basic and applied research. National policies, norms, and standards for HIV/AIDS care are often influenced by the knowledge and experience gained within these facilities.

Living with HIV/AIDS implies obtaining medical and other types of support from the most convenient and effective sources of care. The continuum of care will therefore require defining roles and functions within each of the elements of the care continuum; creating services and securing the resources adequate to perform these roles and functions; and building the bridges between each of the elements of the continuum so that referral and return home coincide with the corresponding level of care provision and capacity for any point of the evolution of HIV infection.

M&E Planning Step 2: Agreeing On A Framework

Monitoring and evaluating HIV/AIDS care at the implementation level must be modeled on the concept of the care continuum that is relevant to the situation one is working in. It should seek to collect, analyze, and use data that reflect the extent and quality of care provided at all levels of the health care system, and identify gaps requiring remedial actions. At the outset, an agreement has to be reached on what the norms or standards of care provision should be in that setting. Standards can be defined in public health terms as something that serves as a basis for comparison and is usually described in a guideline, protocol, or operational procedure for that setting (this definition is adapted from Stedmans' Medical Dictionary13). Once the standards are set, programs can develop indicators and other measurement tools to assess the scope (how comprehensive are they?), quality (how good are they?), and coverage (how many in need are reached?) of care services at each level.

A fourth, equally important, dimension is monitoring and evaluating the organization and efficiency of the health services provided. The levels of evaluation mentioned earlier in this chapter, which deal with inputs, such as structures (is there privacy to conduct counseling?), supply lines (are drugs regularly available?), capacity (is time allocated to health staff to conduct counseling?), staff attitudes (how much stigma exists within a health facility?) are examples of monitoring efficiency.

For example, a standard for quality of palliative care could be that oral codeine be used in the treatment arsenal of care providers, while the standard for coverage would be that codeine is regularly available from public or private sources by PLHA who need it. The indicator for palliative care would then be the proportion of PLHA within a home care program who have access to codeine.

Table 7-1 provides examples of possible standards that can be put into operation to monitor whether or not a comprehensive approach incorporating the continuum of care is functioning.

M&E Planning Step 3: Setting Standards For Comprehensive Care

It is important to emphasize that standards are not necessarily universally applicable, but reflect the best care obtainable in current circumstances in a particular environment or setting. In theory, standards should be formulated for minimum, optimum, or maximum levels of care, taking into account possible variations in the resources or skills available, development of new and cheaper technologies, and the ease of access and affordability in different geographic areas within a particular country. The ultimate goal of many care programs, however, is to achieve equity in the provision of care across countries and populations. Experience has shown that as countries develop their care capacity, inequities are significant and long-lasting features of most care programs. Thus, in many countries, the design of HIV/AIDS care programs and their monitoring and evaluation elements are based on minimum standards that all implementing actors are expected to abide by and use as references to evaluate their performances. Those responsible for setting standards for appropriate care provision in any particular situation need to consider three different dimensions that influence the choice of standards:

• The first dimension deals with the technical aspects of the intervention to be provided and is determined by the efficacy and effectiveness of the specific intervention. For example, isoniazid (INH) prophylaxis for people dually infected with HIV and tuberculosis (TB) is the "universal" standard.

• The second dimension is determined by the social and contextual factors that allow efficacious interventions to function under operational conditions. For example, low demand for HIV testing due to stigma and unavailability of TB drugs for AIDS care units makes a "universal" standard not relevant for many settings.

• The third dimension is determined by the level at which interventions are provided. Such levels include the community level, the clinic and hospital level, or the tertiary referral level. For example, INH prophylaxis is only a realistic standard at referral sites where active TB exclusion and monitoring can be guaranteed.

Very few care projects have actually developed standards, although there is a current move to define national standards for care in many heavily affected countries. Uganda is now completing work on a set of minimal or essential standards for care that will apply to all care-providing institutions, together with an enhanced set of standards applicable where resources and capacities allow. Box 7-1 shows how Uganda has put these principles into practice.

M&E Planning Step 4: Defining Indicators To Measure Comprehensive Care

Once standards have been agreed upon and formulated in a protocol, guideline, or set of performance procedures, indicators or measurement tools must be developed for the monitoring or evaluation exercises. Quantitative HIV care indicators have been developed for programmatic purposes to measure progress in HIV care delivery countrywide in order to improve national planning and resource allocation6.

At the implementation level, more detailed quantitative indicators and qualitative information are needed to aim for site-specific performance enhancement. These measurements will assist implementers to detect gaps in scope, quality, coverage, or efficiency and allows for planning remedial action. The examples in Box 7-2 show sets of indicators for the various elements of comprehensive care.

Cross-cutting issues

Combining Quantitative and Qualitative Measurement Tools is Necessary to Capture the Context of Providing Care
Quantitative assessment through indicators may not convey the full picture needed to assess the results of care provision. An understanding of these facts can only be achieved by using complementary qualitative approaches to help put the quantitative data in context and allow for a full appreciation of the wide range of technical, social, and psychological aspects that care entails.

Particularly with HIV programs, contextual factors that determine illness perception and care-seeking behavior must also be considered. Contextual factors can affect interactions between the care provider, community, and patient. For example, the occurrence of tuberculosis in an adult may be strongly perceived by family and community as HIV-related and thus induce fear, denial, and non-care seeking, all of which may result in increased risk of spreading tuberculosis as well as HIV. Alternatively, terminal illness in an environment where home care is operational and the family is supportive may result in disease progression with fewer complications. Monitoring and evaluating care activities must therefore measure, as well as possible, changes in these contextual factors as they influence planning, inputs, and program outcomes.

Standards Will Evolve Over Time
Over time, each element relevant to HIV/AIDS care interventions may be subjected to changes as a result of internal (such as program performances) or external (such as social and economic variations) factors. When applied to HIV/AIDS care, the monitoring and evaluation process, particularly with regard to indicators, should therefore be flexible and adapt the indicators to these changes.

Care program inputs will evolve depending on the amount of acceptance within families and communities, the disease burden, priorities, and the resources available.

Program outputs will change with the application of technical innovations, the strength of partnerships addressing comprehensive needs, and the level of efficiency within care delivery institutions.

Several key principles, which transcend the domain of HIV/AIDS care but determine needs and demands, should also be taken into account in devising monitoring and evaluation methods applied to HIV/AIDS care. These principles include gender sensitivity, age sensitivity, respect for human rights and ethics, and sensitivity to target groups such as drug injecting communities.

Gender sensitivity requires that programs be devised so as to recognize and respond to specific needs, demands, aspirations, and capacities of women and men and the constraints imposed on them. Likewise, monitoring and evaluation methods should aim to measure and describe these specifics, and measure the extent to which these are reflected and attended to in HIV/AIDS care initiatives.

Age sensitivity implies that HIV/AIDS care initiative recognize the specific needs of boys, girls, men, and women at various stages of their lives. For example, HIV/AIDS care services specifically designed for young people may have greater health and social impact than if they were incorporated into health services catering to the needs of all age groups. Age sensitivity also has a role to play when monitoring and evaluation systems are designed. Defining "adults" as 15-49 year old men and women may obscure the needs of 15-18 year olds, who as "children," may require different care than adults, and dismiss those of adults older than 49 as non-existent or irrelevant.

Respect for human rights is reflected in the extent to which governments create the conditions that enable people to have access to care, and ensure that HIV/AIDS care initiatives do not discriminate on the basis of such factors as race, ethnicity, sex, age, or sexual identity. Access to information and education, to free movement, and to the right of privacy (through the protection of confidentiality) are examples of human rights particularly relevant to HIV/AIDS care14. The ethics of HIV/AIDS care, which may in some cases find its roots in human rights law, may add to the obligations of care providers. For example, the ethics of informed consent regarding care (including HIV testing) is critical to HIV/AIDS care initiatives and, as such, should be considered as relevant to the monitoring and evaluation of these initiatives. Likewise, respect for confidentiality and the client's wish to accept or reject any care-related intervention are also relevant for monitoring and evaluation initiatives.

Considered as the attributes of effective health programs, the combination of sensitivity to factors such as gender and age and respect for non-discrimination and other human rights should provide a lens through which every monitoring and evaluation indicator is examined. For example, if an indicator is the proportion of people having access to tuberculosis prophylaxis, or to HIV testing and counseling, a set of corollary questions should include: Are there differences in this regard between men and women? Between youth and adults? Between races? And among them, which mix of attributes is more likely to be associated with lowest access to these services?

Suggested Methods To Measure Indicators And Address Cross-Cutting Issues

Ideally, indicators such as those shown in Box 7-2 should be made routinely available to guide service performance. However, the complexity of indicators, the cross-cutting issues mentioned above, and, in particular, the confidentiality of all patient-linked information make a routine monitoring approach impractical. If they are carefully planned using quantitative and qualitative approaches, surveys or small studies at regular intervals can provide necessary information to identify ways to improve services and learn about sensitive issues. However, it will remain difficult to measure coverage because all infected people in need of care cannot easily be identified at the community level.

A health facility-based observational survey and staff interviews can address the scope of comprehensive care elements and capacity issues such as trained staff, drug supply status, and referral capacity (as mentioned in Box 7-2). Focus group discussions with care providers can provide very useful additional information on attitudes, gender or age biases, and personal fears and concerns. When repeated yearly, these surveys, interviews, and discussions can detect trends in both the quantitative and qualitative sense. When it comes to measuring perceptions or experiences of patients or clients receiving care, inpatient or exit interviews at the care facility may not be the best source of information. People with HIV usually do not want to risk being identified through interviews as HIV positive. However, where support groups for people living with HIV exist, innovative ways to gather members and others for focus group discussions are feasible. Accepting that such a group is not randomly selected, conclusions about coverage of care cannot be made, but very useful information on the quality of care and insights about care provision as well as information on stigma and gender issues can be obtained. Household interviews within home care programs for people with chronic illnesses usually identify those with late-stage disease. Again, qualitative methods such as in-depth interviews or focus groups can provide information on quality of home care and care-seeking behavior, while survey methods using questionnaires can elicit data on coverage and scope.

Conclusion

This chapter has attempted to propose approaches to developing monitoring and evaluation mechanisms for HIV/AIDS care programs. The proposed approach recognizes that such systems should develop along several guiding principles:

• The standards and norms of care should be defined in each country, for each level of services, and for each population affected, and these norms and standards should be used as baseline reference for monitoring and evaluation purposes.

• The efficiency and effectiveness of the care continuum should be monitored and evaluated in order to explore and document the possible occurrence of gaps in the referral system.

• Monitoring and evaluation systems must be geared to respond to questions that are relevant to decision-making at the local level, where care has been provided.

• Cross-cutting issues should be considered both in designing HIV/AIDS care programs and in drawing up and implementing monitoring and evaluation processes. Monitoring and evaluation processes should build such factors as gender, age, and human rights into their initial design and draw on quantitative and qualitative methods.

By feeding into periodic program planning, the application of findings arising from monitoring and evaluation will affect the equitable access to quality care. The capacity of care systems to add more effective and costly HIV/AIDS drugs to their treatment panoply will depend, to a large extent, on their ability to demonstrate that they can effectively and safely deliver increasingly complex services.

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