Integrating CTC and HIV/AIDS Support in Malawi

By Saul Guerrero, Paluku Bahwere, Kate Sadler, and Steve Collins, Valid International

Saul Guerrero is a Social and Community Development Advisor. Dr. Paluku Bahwere (PhD) is a medical doctor. Kate Sadler is a Public Health Nutritionist. Dr. Steve Collins (MD) is a medical doctor and Director of Valid International.

Locally produced RUTF is provided to beneficiaries in the CTC programme

The authors regularly work as CTC programme advisors with Valid International, and were involved in the coordination and conduction of the CTC and HIV/AIDS study in different capacities. The authors would like to thank Food and Nutrition Technical Assistance (FANTA) and the SARA project for financial and technical support, and Concern Worldwide and Ministry of Health and Population (MoHP) in Dowa District for facilitating the conduction of the study

This article describes the research findings¹ of the first phase of a two-part study in Malawi by Valid International, which is exploring how existing CTC programmes can be adapted in the context of HIV/AIDS.

Over the last five years, Valid International has spearheaded the development and implementation of the Community-based Therapeutic Care (CTC) approach for the treatment of acute severe malnutrition. The CTC model is designed to provide timely, effective and cost-efficient assistance in a manner that strengthens and empowers the affected communities and creates a platform for longer-term solutions to the problems of food security and public health. In practical terms, the combination of its three core components (Stabilisation Centre (SC), Outpatient Therapeutic Programme (OTP) and Supplementary Feeding (SF)) with food security and health education programmes, offers a more holistic approach to the treatment of malnutrition.

CTC was first implemented in Malawi as a joint pilot programme between Valid International and Concern Worldwide during the 2002 nutritional emergency. The focus of the CTC programme in Malawi has, since the end of the emergency period, shifted to a more long-term integration with local health structures. The programme has proved successful, with over 3,000 severely malnourished children admitted since 2002, and a 69.4% recovery rate as of early 2004². In spite of the encouraging results, and the support that the approach has gained within country, the impact of HIV/AIDS in Malawi has forced a more in-depth re-examination of the aptitude of the current CTC model to face the so-called 'New Variant Famine' and the HIV-fuelled increase in food insecurity and malnutrition rates in Africa³.

Since January 2004, Valid International, in collaboration with Support and Analysis for Research in Africa (SARA) and Food And Nutrition Technical Assistance (FANTA), has been conducting a twopart study to explore ways in which existing CTC programmes can be adapted to provide communitybased care and support to HIV-affected individuals, households and communities. The findings of the first, more qualitative part of the research are presented in this article. They offer the first insight into the opportunities, challenges and long-term implications of such an essential expansion of the CTC approach.

Aims and objectives of the research

The research study is divided into two phases. The first, phase A, explores the use and appropriateness of CTC as an entry point for providing longerterm HIV-related care, treatment and support in the community. The second stage, phase B, aims to establish whether HIV positive children can recover from severe acute malnutrition when given a standard CTC protocol. The findings outlined in this article relate exclusively to phase A of the study.

The aims of phase A are three-fold:

1. to examine the effectiveness of the CTC programme in Dowa district for identifying households affected by HIV/AIDS
2. to examine the relationship between the perceived needs of, and what is being provided for, People Living With HIV/AIDS (PLWHA) and HIV affected households in Malawi, and
3. to examine how well the CTC programme in Dowa district meets both the perceived and actual needs of PLWHA and HIV affected households.

The research focused primarily on Dowa district, but activities were also conducted in Lilongwe, Blantyre and Nkhotakota districts.

Given the qualitative nature of this part of the study, the methodology relied heavily on Focus Group Discussions (FGDs), Semi-Structured Interviews (SSIs), Questionnaires and Surveys. Participants included support agencies (e.g. nongovernmental organisations (NGOs), Community-Based Organisations (CBOs), governmental groups, community support groups, etc.) beneficiaries of HIV support programmes, members of HIV affected households, traditional health practitioners, agricultural extension workers, Ministry of Health (MoH) staff and traditional local leaders, among others. Planning, conducting and analysing the results of this first phase of the study extended over a sixmonth period.

General findings

The majority of the support programmes for HIV affected households surveyed during this study were found to rely on proxy indicators for identifying beneficiary households. Of these indicators, the most commonly used are chronic illness (i.e. 3-12 months), households looking after orphans (both parents deceased), single parent/widow headed households, elderly-headed households, child headed households (child less than 18 years old) and households with children of deceased HBC clients.

The needs of PLWHA and HIV affected households were found to cover ten different categories. These categories were ranked by participants under two groups, primary (nutritional, material, medical, economic, psycho-social, spiritual, and patient care) and secondary (food security, knowledge on prevention, and vocational skills). The ranking of needs reflected a prioritisation of immediate over long-term needs, as well as the gaps in the support available in the research area.

The support available to PLWHAand HIV affected households was found to come from both formal (e.g. international NGOs, CBOs, governmental structures) and informal sources of support (e.g. community initiatives and groups). Formal sources were most effective at providing nutritional, medical, food security and economic assistance. Informal sources, on the other hand, were most successful at addressing the spiritual, psycho-social and patient care requirements of PLWHAs and HIV affected households. Together, both informal and formal sources engage with all but one of the primary areas of need and one of the three secondary needs. Evidence collected during the study, however, suggests that the provision of support by formal sources - such as NGOs - has led to the weakening of informal support mechanisms within the communities. In Malawi, the support of community members is often crucial in dealing with illnesses in the household. One of the study participants said: "I have been sick for three years and the assistance I have received has been enough, given that the people who assist me are themselves poor but spare something for me.they wash my clothes, beddings and give me other things that I need in my household". The availability of external formal support, however, is weakening this type of community assistance. In the words of another respondent, "some people in the community say that we get a lot of money from [the NGO] so they refuse to assist us". The effect of formal support programmes has also been felt in NGO initiatives to strengthen food security in the communities at large. The study found evidence that the singling out of individual households for HIV related support, leads to dissatisfaction and decreasing levels of community participation in other programmes aimed at the community at large.

Although formal and informal sources of support jointly take on most need areas of PLWHA and HIVaffected households, the study concluded that the appropriateness of the assistance available to these households is limited by inadequate engagement between support providers - to reduce replication - and between providers and beneficiaries. Initial engagement - in the form of needs assessments, for example - was inadequate, resulting in a poor understanding of the most basic needs of the individuals and households targeted (e.g. beneficiaries receiving tools and seeds when their priority needs related to hygiene and health). Post-distribution evaluations and the erratic distribution of goods and support also resulted in limited health impact and widespread dissatisfaction among beneficiaries.

Stigma was found to be a cross-cutting issue throughout the conduction of this study. Although there are indications that stigma may be on the decrease at a national level - as a result of awareness campaigns and the better availability of support - in Dowa district, stigma continues to surround HIV/AIDS, affecting the identification and provision of support to those infected and affected by the disease. Although stigma surrounding HIV/AIDS has been traditionally associated with a lack of understanding of the nature and transmission of the disease, the study also found links between stigma and the provision of support by external agencies/organisations. In the words of one respondent, ".because we came out in the open as HIV positive, people say that we should not be given assistance because we are going to die soon."

The current CTC model and HIV/AIDS in Malawi

Using the most commonly used proxy indicators described above, the study established that a relatively high proportion (65.7%) of HIV affected households with malnourished children had enrolled in the CTC programme. Due to the large number of HIV affected households without malnourished children, only 16.2% of the total HIV affected households surveyed were enrolled in the CTC. This indicates that in order to target a greater proportion of the HIV affected population, the present CTC model would need to expand its target criteria and include other indicators beyond child malnutrition.

Under the current CTC model, all beneficiaries receive nutritional, medical, food security and material support. The study concluded that - from a community perspective - the current CTC approach adequately meets the support needs of targeted children in these areas. The nutritional, medical, food security and material supports were deemed sufficient by participants, and the mode of delivery and quality of the distribution process widely characterised as appropriate. The participants' views regarding the appropriateness of the medical and nutritional care are substantiated by the high recovery and low non-response rates in the programme. In terms of the adequacy of the support for the household, however, the majority of the respondents felt it was insufficient to meet their household's needs. This was a foreseeable conclusion, given that the current targeting criteria focuses on individual malnourished children and not on meeting the nutritional (or any other) requirement of HIV affected households as a whole.

Future implications for the CTC approach

Valid and MoH workers in Dowa District

Although the results from the initial phase of the study shed some light on the changes required for the CTC to be used as an approach for the delivery of HIV support, the overall findings of the research - i.e. from phases A and B - will be necessary before conclusive steps are taken towards any adaptation of the CTC model. So far, however, the study has shown that in order to target a much greater proportion of HIV affected households, changes in the current targeting criteria of the CTC programme are required. CTC must expand its target group to include malnourished and chronically ill adults. Current anthropometric indicators for identifying malnutrition in adults and children must also be used alongside a combination of some of the proxy indicators identified in this study (and further explored in phase B). These changes would ultimately allow for more effective identification and the inclusion of a larger proportion of HIV affected households.

The findings also suggest that the CTC as an approach is suitable for providing longer-term care to HIV affected and infected individuals and households. CTC was found to be advantageous due to its minimal impact on the daily activities and resources of the enrolled households, and decreased risk of contracting opportunistic infections. The assistance currently provided under the CTC was reported as adequate to meet the needs of targeted children residing in HIV affected households. The medical and nutritional protocol appear also to be effective at treating malnourished HIV-infected children, an area which is currently being further assessed under phase B. Some changes and additions, however, are necessary to enable the CTC to be a more effective medium for the delivery of support to PLWHA and HIV affected households. For example, the CTC needs to provide long-term HIV specific nutritional support to the HIV infected, HIV-related nutritional counselling, and more comprehensive palliative care.

Successfully using the CTC to provide support to PLWHAand HIV affected households, however, rests as much on the expansion of its own services as it does on the successful integration of existing sources of (formal and informal) support to form a coordinated network of assistance. The information collected during this study offers initial suggestions for the creation of such a network in a way that (re)empowers the community, minimises replication and maximises the quality of the assistance provided to PLWHAand HIV affected households. The role of the CTC in this multilateral approach could eventually be two-fold, as the developer of a comprehensive support package that incorporates the needs identified during this study and WHO/UNAIDS recommendations, and by acting as a coordinating structure working to ensure that support provided by partners is regular and consistent. This reconceptualisation of the CTC's role is in its early stages. Over the next two years precisely this model will be tested in a joint programme between Valid, the Zambian Ministry of Health and Concern Worldwide, designed to merge key aspects of the CTC and the provision of support to HIV infected and affected individuals and households.

For further information, contact Saul Guerrero, email: saul@validinternational.org or the Valid International office, email: office@validinternational.org

¹Valid International/SARA/FANTA, 2004. Study to Examine the use of Community-based Therapeutic Care (CTC) to support HIV/AIDS infected and affected individuals, households and communities. Valid International, Oxford, 2004

²Collins, Steve, 2004. Community-based Therapeutic Care; A New Paradigm for Selective Feeding in Nutritional Crises. HPN Network Paper, No. 48, London, November 2004

³De Waal, Alex & Whiteside, Alan, 2003. New Variant Famine: AIDS and Food Crisis in Southern Africa, The Lancet, 362: 1234-37, October 2003