AIDSQuest: The HIV/AIDS Survey Library
Topic C: Care and Support

Overview
While in earlier years, attention to HIV focused on prevention of infection, issues of care and support for those who are HIV-positive are gaining more attention. Many developing countries have relatively weak health infrastructures, which are becoming additionally burdened by AIDS-related infections. Investigation into care and support issues is crucial for understanding how health services can accommodate and satisfy the needs of their clients. Examining care and support of those affected by HIV also goes beyond institutionalized health systems. More community-based models are being adopted, and many private non-governmental organizations are filling some of the gaps. In addition to providing assistance to those who are ill from AIDS and their affected families, orphan-specific issues such as well-being and will-planning are important topics. To assess the impact of care and support programs and find out if they are meeting communities’ needs, it is important to determine the existing support networks and capabilities of these communities. The concept of care and support encompasses a number of issues. The care and support topic in AIDSQuest addresses a number of issues, including the four topics highlighted in this section: quality of and access to care, quality of life, orphans and vulnerable children, and social support.

Quality of and access to care
Investigations into quality of care attempt to discover whether services offered satisfy the needs of clients. This includes clinical management, nursing and home care, and psychological care for those infected with HIV. Access to care can be looked at from two points of view—physical and economic. Access questions can measure first whether services related to HIV/AIDS care exist or are known to a community, and second whether these services are affordable and within reach.

Quality of life
Quality of life can be described as individual’s perceptions of their health and/or position in life in the context of the culture and value systems in which they live. Questions may look at physical and/or mental well-being, in relation to their goals, expectations, standards, and concerns. HIV can affect both physical and mental well-being, and care and support can try to improve both. It is typical for quality of life instruments to have validated scales, which have been tested and validated—and many of the HIV-related quality of life questionnaires come with guidelines on how to measure/score the responses. Surveys examining well-being almost always examine both physical and mental characteristics, but scores for the two are often kept separate.

Orphans and vulnerable children
Supporting orphans is becoming one of the fastest growing areas of HIV/AIDS care and support, especially due to a sharp rise in orphan numbers in developing countries. Questions involving orphans can go beyond measuring orphan population counts, by also investigating the needs of their caretakers and the impact of HIV on affected children’s well-being.

Social support
Questions relating to social support will often ask respondents about who they turn to for mental or financial assistance. For example, an orphan-related questionnaire may ask children who they most want to talk to when they are having problems, or when they feel bad. Tracing support networks can help care and support programs determine the most appropriate avenues of delivering services.

Examples of questions relating to care and support have been selected from the following questionnaires:

1. Quality of and access to care

• FHI—Behavioral Surveillance Surveys

• Horizons—Scaling-up Care and Support Services for PLHA

• UNAIDS/MEASURE Evaluation—HIV/AIDS Prevention Indicator Survey

• UCSF CAPS—Home Health Study/National AIDS Behavioral Study

• CSTS Project—Rapid Knowledge, Practices, and Coverage (KPC) Survey

• Horizons—Kenya Health Worker Survey

2. Quality of life

• Horizons—Refining Interventions to Improve the Well-being of AIDS-affected Children

• Horizons—Scaling-up Care and Support Services for PLHA

• WHO—WHO-QoL HIV

3. Orphans and vulnerable children

• Horizons—Refining Interventions to Improve the Well-being of AIDS-affected Children

• CSTS Project—Rapid Knowledge, Practices, and Coverage (KPC) Survey

• FHI SCOPE—Orphans and Vulnerable Children Baseline Survey

• World Bank—Child Needs Assessment (CNA) Survey

• Population Council—RAPIDS Baseline Survey: Questions for youth aged 15-18

• Horizons—Assessing the Psychosocial Benefits of a Community-based Home Visitation Program for Orphans and Vulnerable Children in Rwanda     

4. Social support

• Horizons—Determining Needs and Opportunities to Address Trafficking of Girls and Women

• Horizons—Evaluating the Impact of HIV Prevention Programs in Schools

• Horizons—HIV-associated Violence: Implications for HIV Counseling and Testing Programs

• Horizons—Testing Clinic- and Community-based Strategies for Reducing Mother-to-Child Transmission of HIV

• UNAIDS/MEASURE Evaluation—HIV/AIDS Prevention Indicator Survey

• Horizons—Testing Difference Approaches to Promoting Adherence to HAART in Mombasa, Kenya, Questionnaire A, Baseline Adherence

• Horizons—Enhancing HAART in Thailand

• Horizons—Assessing the Psychosocial Benefits of a Community-based Home Visitation Program for Orphans and Vulnerable Children in Rwanda

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This page updated 21 August 2006

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