Treatment, care and support for young children affected by HIV and AIDS

Infants who are HIV positive have little or no access to anti-retroviral drugs (ARVs) and around half die before the age of one. Most of the rest die before the age of five. ARV treatment programmes do not appear to be targeting this age group. Under conditions of poverty, ill-health and stress, parents and other caregivers struggle to meet nutritional, health and psychosocial needs of children at a critical and formative stage. Most very young children born to HIV positive parents spend their first few years with ill and tired caregivers. Where a child loses one or both parents to AIDS, they are usually absorbed into extended families in which primary caregivers are grandmothers whose situation is also often overlooked. This Key list includes a range of case studies, toolkits and analysis that can be used to help strengthen community responses and take action to help young children.

We welcome your feedback: please send comments or suggested additions to sourceassistant@hi-uk.org.

Selected resources

Books, reports, etc

Annotated bibliography : children and families affected by HIV/AIDS

INTERAGENCY COALITION ON AIDS AND DEVELOPMENT (ICAD)
2003

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This is an annotated list of documents and papers concerning children and families affected by HIV/AIDS. Mostly written in the 1990s and early 2000s, it is a wide-ranging bibliography covering key issues and implications for women and children in the light of the HIV and AIDS pandemic

Approaches to caring for children orphaned by AIDS and other vulnerable children : essential elements for a quality service

LOENING-VOYSEY, Heidi
WILSON, Theresa
February 2001

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This research study examines responses to the care of orphaned children. The goal of the study is to develop policy recommendations for the care of orphans and vulnerable children (OVC) in South Africa. It complements a partner study into the cost effectiveness of care. Here quality care is that which meets the needs of children in a culturally acceptable way and enables them to realise their rights. It examines a variety of approaches to care from formal to non-formal ways and examples, and case studies are looked at in order to evaluate quality. Conclusions and recommendations are made around the continuum of approaches for the care of OVC, the capacity of households to care for OVC, mobilising communities to care for OVC, and providing a safety net for OVC

Assessment and improvement of care for AIDS-affected children under age 5

LUSK, Diane
HUFFMAN, Sandra L
O'GARA, Chloe
June 2000

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Firstly statistical information about children under five affected by HIV/AIDS is documented along with the consequences of inadequate care for under five year olds. The special problems facing vulnerable children are addressed using age specific categories, including health and psychosocial concerns. Also examined are some cultural beliefs and traditions that impact upon children under five living in AIDS affected communities, including how orphans are perceived and treated. Who cares for under fives is also addressed, along with a critique of orphanages and alternative programmatic suggestions. The authors also review some assessment tools for the care of vulnerable children for feeding, health care and childrearing practices, and the time restraints of caregivers. There are some useful practical questions that can be put to communities and households in AIDS affected areas to assess the impact upon young children. Recommendations are then made as to appropriate strategies

Children in residential care and alternatives

MILES, Glenn
STEPHENSON, Paul
January 2001

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Residential Care and Alternatives is based on child development and protection principles. Tearfund is a Christian organisation and the document makes a number of references to Christian scripture and values. It could be a useful tool for helping Christian organisations that provide, or that are considering providing, residential care to explore better care alternatives or improving the quality of residential care

Children on the brink 2004 : a joint report of new orphan estimates and a framework for action

UNITED NATIONS CHILDREN'S FUND (UNICEF)
JOINT UNITED NATIONS PROGRAMME ON HIV/AIDS (UNAIDS)
USAID
July 2004

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Millions of children are growing up without parents. Millions more are in households with family members sick or dying from AIDS; children in sub-Saharan Africa have been hardest hit. This report presents the latest statistics on historical, current and projected numbers of children under 18 who have been orphaned by AIDS and other causes. This edition of the biennial report underscores the changing needs of this vulnerable group as they progress through adolescence and calls for the urgent development and expansion of family and community support

Children, HIV/AIDS and communication in South Africa : a literature review

FOX Susan
OYOSI Salome
PARKER Warren
May 2002

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This literature review covers key issues relating to children aged 3-12 and HIV/AIDS, including discrimination, grief, children's rights, and knowledge and understanding of HIV/AIDS. The impact on the child, family and community is discussed in detail, particularly in terms of the psycho-social impact of bereavement and how this impacts on the child at different stages in its development. Various community programmes within southern Africa are highlighted, which support children to develop life skills. The influence, role and practice of the media in working with and reaching children is addressed, and case studies of South African media projects such as Soul Buddyz and Takalani Sesame are provided

Community based care for separated children

TOLFREE, David K
2003

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The International Save the Children’s Alliance organised a project called ‘Care and Protection of Separated Children in Emergencies’ to address the issue of children that are separated from their parents in situations of armed conflict, natural disasters, pandemics such as AIDS and various forms of exploitation and abuse. The initiative explored issues of fostering, group care, and other types of care arrangements for children. The project produced case studies in 6 countries. Participatory research with children was a key theme. This paper offers a ten-point analysis of the typical negative features of institutional care and then looks at community based care. This is done firstly under the heading of preventative approaches to avoid the unnecessary separation of children, then alternative care strategies such as community based care. There are some concluding comments pointing towards the need for further research and the need to place more emphasis on what children themselves have to say in research, in policy formulation and in developing good practice

Formative communication research on early childhood development in Uganda

BAUME, Carol A
et al
2004

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This is a report on findings of five years of communication research on parental interaction with young children in Uganda. The purpose was to identify factors that inhibit and encourage positive parental interactions (PPI) with young children, in order to guide the development of project communication and intervention strategies. The study covered opportunities for parent-child interaction, concepts of intelligence, parental role in school outcomes, beliefs and attitudes about child development, current parental interaction with children and behavioural analysis and program implications

Handbook on paediatric AIDS in Africa

TINDYEBWA, Denis
et al
2004

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This handbook intends to provide users in resource-poor countries with a tool that can be adapted to their needs. It follows the four principles of the United Nations Convention on the Rights of the Child and aims to provide a simple, accessible and practical handbook for health workers involved in preventing infection and caring for children infected and affected by HIV. It includes substantial chapters on caring for HIV-exposed and HIV-infected children, infants and orphans; diagnosis and the clinical stages of HIV infection; clinical conditions associated with HIV (diarrhoea, malnutrition, neurological manifestations, skin manifestations and more); pulmonary conditions; anti-retroviral therapy for children; youth issues, long-term and terminal care planning; psychosocial support. The primary targets are medical students and their lecturers, nurses, clinicians, community health workers and other service providers in resource poor settings where there is a significant HIV and AIDS burden

Health South Africa : efforts to ARV for kids are still in their infancy

NDURU, Moyiga
May 2004

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An interesting article noting the challenges of supplying the medicines to HIV positive children who have received little attention. Early in 2004 the South African national programme to provide anti-retrovirals (ARVs) became operational. There is now hope that this will bring opportunities for under 14 year olds including very young children to gain more access to the drugs. The government is seeking to treat over 50,000 people per year under the ARV programme. In private clinics it costs almost US$93 to put a child on ARV for one month although this has halved since two years ago. Doctors and health officials are debating about what age is right for a child to start ARV treatment although theoretically it can start as soon as it is born. Doctors Without Borders advises that treatment should start as soon as a child is discovered to be HIV positive so that the immune system is bolstered

Helping children in the time of HIV and AIDS

CHLDREN'S INSTITUTE
2004

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The information and recommendations in this clear, accessible publication come from an in-depth multi-site qualitative research study conducted by the Children’s Institute between 2001 and 2003. The research explored the life experiences of children in communities heavily affected by HIV and AIDS. It also looked at the experiences of their caregivers and service providers. This brief publication is aimed at individuals and organisations and considers which children to help, who should help, how to strengthen community responses, and related fundamental questions about starting to take action to help children

HIV risk exposure in young children : a study of 2-9 year olds served by public health facilities in the Free State, South Africa

SHISANA, Olive
MEHTAR, Shaheen
2005

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South Africa has, until now, focused its HIV prevention efforts on youth and adults, and now needs to expand its focus to include children. Much is already known about mother to child transmission, which is the dominant mode of HIV transmission among children. However, little investigation has been done into the potential for horizontal transmission of HIV on the population below reproductive age. This report focuses on children aged 2-9 years and, using a combination of qualitative and quantitative methods, presents evidence on the potential for HIV transmission in dental, maternity and paediatric service in public health facilities. A new finding concerns the practice of shared breastfeeding

HIV/AIDS : what about very young children?

DUNN, Alison
July 2004

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This short paper reflects findings from research carried out to identify current responses to meet the needs of children age 0-8 living in HIV/AIDS affected communities. The overall results show that at local, national and international levels there are gaps in programming and policy to engage ideas and mobilise resources to address the needs and experiences of very young children both infected and affected by HIV/AIDS. The question is then raised: What can we actually do to include very young children in programming and policy responses in HIV/AIDS affected communities? Supporting existing family and community networks and current efforts that are being made by people confronting HIV/AIDS on a daily basis are important strategies. Conclusions are drawn indicating that services are required urgently to support very young children both directly and through the families and communities in which they live. Ways of listening to and including very young children in these processes need to be developed and used. Partnerships need to be developed between parents, families, NGOs, CBOs and government to ensure the holistic development of the child. At policy levels, very young children need to be included in programmes that address children, HIV/AIDS and community development. All government ministries can participate in meeting the needs of very young children in HIV/AIDS affected communities

Matrix of five types of ECD HIV/AIDS interventions, suggested outcome indicators, and comments

WORLD BANK
2004

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This is a matrix of the five recommended types of Early Childhood Development (ECD) and HIV and AIDS interventions. It includes suggestions of delivery services to young children, education and support for families and caregivers, training and support of care providers, sensitisation through the mass media and community mobilisation. It provides indicators and comments for each of these categories and is a useful overview of the key interventions which could take place in this field

Meeting the special needs of young children : the way forward

WORLD BANK
2004

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The ECD HIV/AIDS Workshop in Tanzania 12 - 16 April 2004, co-sponsored by the World Bank, UNICEF and UNAIDS, was the first of its kind in Sub-Saharan Africa. The objectives were to accelerate the early child development response in the region to learn how to access World Bank funding for ECD AIDS activities and to prepare an ECD HIV/AIDS action plan. This report gives a short summary of the workshop

Paediatric ARV roll-out in South Africa

HORIZONS PROGRAM
CAPE TOWN UNIVERSITY
2005

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The Horizons Program of the Population Council and the University of Cape Town are conducting a study to identify successful programme strategies in paediatric HIV treatment in South Africa and to determine priority knowledge gaps to be addressed by operations research. This report summarises key findings from the initial consultative workshop of expert practitioners and stake-holders, focusing on the status of providing antiretroviral therapy to children in South Africa and strategies to expand and improve services. It includes providing services to under six year olds

Speak for the child : community care for orphans and affected children. Case study Kenya

LUSK, Diane
et al
2003

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This is a rare case study of a pilot project to address the specific needs of children under 5 affected by HIV/AIDS who are typically ignored at the programming level and often miss the benefits of general HIV/AIDS interventions. The project operated in Western Kenya and the study contains evidence of the work carried out, a lessons learned catalogue of the processes and tools developed, and a set of suggestions of how the tools and processes might be adapted to other groups in other contexts. It is an excellent example of a community based response to the needs of very young children and addresses the key challenges faced in attempting to do so

Swaziland : grassroots approach to orphan care

Integrated Regional Information Networks (IRIN)
September 2004

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This news report shows steps taken by the Swazi government and UNICEF to collect ideas for development programmes aimed at orphans and vulnerable children. Workers are canvassing the country’s 55 rural districts to find grassroots ideas and responses and also to identify responsible volunteers and authorities who can be counted on to implement them

The cost-effectiveness of six models of care for orphans and vulnerable children in South Africa

DESMOND, Chris
GOW, Jeff
2001

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An analysis of the most cost effective way of providing care for orphaned children in South Africa. It examines six models of care ranging from formal children's homes to community-based structures. The paper is part of a combined study, the other part of which looks at the quality of different types of orphan care and their associated costs. There is initially a detailed look at the various categories of care followed by an outline of the method used to evaluate cost. Six case studies are examined and conclusions and recommendations are made as a result of evaluation

The spillover impacts of Africa's orphan crisis

EVANS, David
2005

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This is a study using a collection of 41 demographic and health surveys from 26 African countries. The households that provide care for orphans are characterised, and the impact of taking in orphans on outcomes for other household residents, including children's health and education, is estimated. A key finding is that orphan care is concentrated in households with fewer other childcare responsibilities, especially elderly households. The researcher found no evidence that having an orphan join the household significantly affected the household, contrary to popular views that orphans generate negative spillovers

USAID project profiles : children affected by HIV/AIDS

UNITED STATES AGENCY FOR INTERNATIONAL DEVELOPMENT (USAID)
January 2005

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This document presents profiles of 114 projects (90 country-specific, 12 regional, and 12 global) funded by USAID. It includes a section on USAID projects that support access to education in Africa. The project profiles include the names of implementing organisations, funding periods and amounts, objectives, strategies, key accomplishments, priority activities for the year ahead, and materials and tools available to other projects that can help meet the needs of children and youth affected by HIV and AIDS. The diversity of these projects demonstrates the US government's efforts to meet the wide variety of needs of children and youth affected by HIV and AIDS. Approaches vary in both strategy and scale. The vast majority of projects work with communities to identify opportunities that strengthen existing resources without undermining local ownership. In many places, communities are already mobilised and have systems in place to identify, protect, and provide basic necessities to the most vulnerable children. USAID supports the strengthening and monitoring of these existing activities

Using social transfers to improve human development

DEPARTMENT FOR INTERNATIONAL DEVELOPMENT (DFID)
February 2006

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This note provides an introduction to how social transfers - particularly cash transfers and vouchers - can improve human development, particularly for the extreme poor and socially excluded

Email forums

REPSSI Forum

The Regional Psychosocial Support Initiative For Children Affected by HIV/AIDS (REPSSI)

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This forum is aimed at promoting awareness of psychosocial support for children affected by HIV/AIDS.

Journal articles

HIV/AIDS and early childhood [whole issue]

BARTLETT, Kathy
ZIMANYI, Louise
Eds
December 2002

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This is one of the few publications solely dedicated to early childhood and HIV/AIDS. It contains articles examining the particular experience of the very young child and the social, psychosocial and nutritional impact on their lives in AIDS affected communities. There is also an article about infant feeding practices in Africa. It makes some policy recommendations and the several case studies provide some direct examples of programming in this area

Orphans and schooling in Africa : a longitudinal analysis

EVANS, David
MIGUEL, Edward
2005

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This paper looks at the impact of parent death on primary school participation using an unusual five-year panel data set of over 20,000 children in rural Kenya. There was a focus on children who began the study period as non-orphans and compare children who subsequently lost a parent to those who did not. There is a substantial decrease in school participation following a parent death as well as evidence of a drop before the death. Effects are largest for children whose mothers died, for young girls (under age 12) and for children with low base line academic performance. The authors then discuss implications for the design of programmes to assist orphans and vulnerable children

Multimedia

Integrating food and nutrition into HIV and AIDS strategies

MCDERMOTT, Peter
2005

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This is a slide presentation which considers the role of food and nutrition in the context of HIV and AIDS. It notes the vicious cycle of malnutrition, HIV and poverty and the effects of HIV and AIDS on nutrition, household food security and food production. HIV and AIDS also have an impact on the agricultural sector and examples are shown from Kenya, Zambia and Malawi. Increased malnutrition can lead to adults needing more access to quality health care but not getting it, increased caring for sick adults means less time for childcare, and children drop out of school to help with household labour. Finally, UNICEF support to nutrition and HIV and AIDS is shown along with their current operational approach. The Food and Agriculture Organization (FAO) and World Food Program (WFP) approach is also considered

Websites

ChildCareExchange.com

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This website is a useful resource for publications, conferences, documents and websites to do with childcare and is targeted at educators and caregivers. Although it is US-based, it does cover global issues. The key publication, Childcare Information Exchange is available through the website which also contains a list of early childhood organisations

ECD and HIV/AIDS

WORLD BANK

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This website is updated with current initiatives on ECD and HIV/AIDS. It includes details of the important workshop on ECD and HIV/AIDS held in Dar es Salaam in April 2004. The site provides links to resources on HIV and AIDS and links to organisations taking action in this area

Heinemann HIV/AIDS teaching support site

Heinemann Publishers

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This site is a source of information and resources for children of both younger and older age groups. These books and resources are produced to support adults who are working in education, both inside and outside the classroom, to equip children to know and think about HIV and AIDS and how it affects people. There are fiction reviews, information books and curriculum material. Lower primary through to upper secondary levels are covered and aim to give children the knowledge, skills and values they need to tackle HIV and AIDS.
For younger children, there is a series of 3 books.
1. Go Away Dog by David Donald about a grumpy grandmother, a puppy and the importance of care and friendship in a time of sickness.
2. Respect and Care by Glynis Clacherty that looks at respect and care and co-operation amongst children as they confront sickness and loss.
3. Lerato’s Story by Glynis Clacherty which is a lively photo story about a young child who is HIV positive told through the eyes of her sister

Orphans and other vulnerable children support toolkit

INTERNATIONAL HIV/AIDS ALLIANCE
FAMILY HEALTH INTERNATIONAL
December 2005

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This is a collection of information, tools and guidance on supporting orphans and other vulnerable children living in a world with HIV/AIDS. It covers a wide range of subject areas, including running a programme, health and nutrition, education, psychosocial support, economic strengthening, living environments and children's rights. It contains a wide range of useful resources on the different topic areas. It also contains a section on early childhood development

Women, children, and HIV

FRANCOIS XAVIER BAGNAUD (FXB) CENTER
CENTER FOR HIV INFORMATION (CHI)

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This site contains a library of practically applicable materials on mother and child HIV infection including preventing mother-to-child HIV transmission (PMTCT), infant feeding, clinical care of women and children living with HIV infection, and the support of orphans. The goal of the site is to contribute to an improvement in the scale and quality of international HIV/AIDS prevention, care, and treatment programs for women and children by increasing access to authoritative HIV/AIDS information. Its aims are to disseminate state of the art clinical information and training resources on MTCT and related topics. It also communicates the best practices in preventing MTCT and caring for infected children. It aims to disseminate prevention of MTCT program resource materials, clinical information and training resources on perinatally acquired pediatric HIV infection. It is browseable and searchable through a basic 'free-text' search box. The site also features an up-to-date news section.

Organisations

Education, Training and Development Practices (ETDP) SETA

South Africa

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PO Box 5734
Rivonia 2128

The primary function of the ETDP SETA is to facilitate skills development in the education, training and development (ETD) sector. They run a varity of courses, for example courses and units which can be taken in supporting children and adults living with HVI/AIDS in ECD settings. The elective unit is suitable for educators, caregivers and community workers working with adults and children in group, informal or family settings [see http://www.etdpseta.org.za/modules.php?op=modload&name=News&file=article&sid=463 fro more information]