|Guidelines for Children's Participation in HIV/AIDS Programs (The Children and AIDS International Non-Government Organization Network (CAINN)) (UNAIDS, 1999, 29 p.)|
Children Living in a World with AIDS
National Pediatric & Family HIV Resource Centre
The Children and AIDS International Non-Government Organization Network (CAINN) wishes to thank UNAIDS for its generous support in funding these guidelines.
These guidelines were written by Jane Colling, with editing by Christine Hogg and Naomi Honigsbaum. Our sincere thanks go to the members of the CAINN steering group and other colleagues who commented on drafts and shared their experiences, and to Mildmay International who managed the project. Illustrations be David Wood.
For further copies of this booklet please contact:
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UNAIDS, the Joint United Nations Programme on HIV/AIDS was established in January 1996 as a co-sponsored programme that brings together the United Nations Children's Fund (UNICEF), the United Nations Development Programme (UNDP), the United Nations Population Fund (UNFPA), the United Nations Educational, Scientific, and Cultural Organization (UNESCO), the World Health Organization (WHO), and the World Bank. As the main advocate for global action, UNAIDS leads, strengthens and supports an expanded response aimed at preventing the transmission of HIV, providing care and support, reducing the vulnerability of individuals and communities to HIV/AIDS, and alleviating the impact of the epidemic.
"Participation is an acknowledgement of what children can do... It is recognition that children... are also members of society and are thinking individuals who are capable of expressing themselves, As such they too have a say on matters and decisions which affect their lives, but also their community and the larger society which they are part of."
Save the Children, Philippines.
Children are living in a world with AIDS.
· There are children who are themselves infected with HIV. By the end of 1997, 1.1 million children were living with HIV. AIDS is now the fifth leading cause of death amongst children of 1-4 years, and seventh in young people between the ages of 15 and 24.
· There are children who are uninfected but living in an infected family. More than 8 million children world-wide have already lost their mothers to AIDS, and at least 30 million are thought to be living with parents who are HIV positive. Of the people who died of AIDS in 1997, 2.3 million (46%) were women and 460,000 were children.
The voices of children and young people themselves are not often heard. These guidelines show how children and young people can be involved in education, prevention and care programmes related to HIV/AIDS. The extent and nature of their participation will vary in different countries, cultures and communities since the impact of HIV on families and on individuals varies and a child's place in society is viewed differently throughout the world.
These guidelines provide a framework for local projects to develop ways of working with children and young people that respect their rights and enable their voices to be heard. The definition of a child used throughout these guidelines is that set forth in the U.N. Convention on the Rights of the Child as "a human being under 18 years of age".
Only children and young people themselves can tell us what it means for them to live in a world with AIDS. The challenge is to work with them in a way that respects their views and gives them the freedom to participate on their own terms. The United Nations Convention on the Rights of the Child is a holistic set of standards for children and young people (see annex). The Convention provides the principles and framework for working with children and young people, including privacy, confidentiality, the role of the family, health and development. In particular, the Convention highlights the right of the child to participate (Article 12), suggesting that participation brings benefits for children and young people themselves and also the programs which encourage them to participate.
Building self-esteem and developing skills
By participating, children and young people have the opportunity to develop skills and confidence in areas which will benefit them and their communities. Through participation, children and young people learn about co-operation, mutual understanding and social responsibility. They may become better informed and equipped with new skills in communication and in thinking which will prepare them for adult life. When children and young people are better informed they are more able and likely to make decisions about their life for themselves. By meeting other youth in similar situations, they can give each other emotional support and realise that they are not alone.
Programmes that are designed by adults to help children and young people may not always provide them with what they most need. Encouraging the participation of children and young people in the development of programmes is most likely to ensure that they are child-centered. Children and young people need to be involved in designing, monitoring and evaluating programmes.
Raising public awareness
Hearing what children and young people have to say often gives adults new insight into their wishes and needs, and provides relevant information about the activities and plans that can be undertaken to meet them. Greater public understanding may lead to changes in public policies and give youth more protection from prejudice. In addition, children and young people speaking for themselves may raise the profile of programmes and secure additional funding or other benefits. One large non-governmental organization (NGO) working with children in Southern Africa reported that the Government made financial contributions to children's projects and some children were given exemptions from educational fees, following their participation in World AIDS Campaign activities.
Changing public opinion using drama, poetry and song
In Zambia when an adult dies, it is accepted that other relatives take the property of the dead person, often leaving the children without support. In order to draw attention to the consequences for them, children described their experiences in drama, poems, songs and panels and were able to express themselves in a culturally acceptable manner.
"The emphasis was on the distress faced by the child, and not on the cause of the parents death because a child in distress is a child in distress, the cause of the distress is not of primary concern."
Family Health Trust, Zambia 1998.
All children and young people can participate, if they so choose and if they feel it is likely to help them. Involving children and young people, without exploiting them or risking harm, requires skill and patience and, above all, respect for them and their views.
The two major challenges are:
i. learning to listen to children and young people.
ii. ensuring that their rights are respected, which is particularly important for those who are affected by HIV
Listening to children and young people
For children and young people to be empowered through participation, there needs to be:
· A genuine desire to listen to what children and young people have to say.
· A group of children and young people who want to be involved who share similar concerns.
· Workers with experience and skills to work with children and young people.
Adults are used to making decisions for children and young people. They often underestimate the understanding that even young children have and their ability to express their views - if given the opportunity. Developing trust between children and adults is essential in promoting children's participation and may take time. Children and young people need to feel safe before trusting other people enough to talk openly. Listening to children and young people needs patience and a supportive environment where they feel that they are respected and have the time to think about what they want to say. Children and young people may feel more comfortable where participation occurs within the normal, every day contexts of their lives such as school and community groups, youth and peer groups. This means that their lives are not disrupted and the programme is more likely to survive long term.
Ethical issues that underpin work with children and young people affected by AIDS
All children's programmes should promote the rights and interests of children and young people, and restore or maintain their dignity.
1. The best interests of the child should always be put first.
7. Children and parents/careers should be involved in negotiating polices to ensure that they are child-centered.
Protecting children's confidentiality
It is important that children's identity and privacy are protected unless those participating specify otherwise. What participation involves and may mean should be fully discussed with them and measures taken to ensure that they are comfortable with their participation, other participants and the environment or social situation. Children and young people may find it difficult to refuse when they are asked by adults to participate, or may not even understand that they can say no. Where there are rewards offered for participation, there may be particular temptations for parents and children who are poor to participate in ways that may damage them. For example, pictures of children that portray them in a negative or disadvantaged way, may expose their identity and increase the risk of prejudice, discrimination and stereotyping.
Publicity and people living with HIV - a caution
· The first young person who talked publicly about his HIV status in Zambia was rejected and isolated by his family and had to seek solace and accommodation in the organization who had supported him in this decision.
· One organization with a long track record of caring for families with AIDS advises parents and children against talking to the media. Their experience has been that patients and clients have had to be protected from media exposure when, at times, they were unable to understand the implications. One family disregarded all advice, and was later persecuted by neighbors and had to be re-housed out of the district.
Preparing and supporting children and young people
Involving children and young people in programmes must be properly resourced so that there is enough time to prepare children and provide them with support afterwards. The process of getting children to participate should involve:
· Making sure children know what participation involves.
· Support during the activity.
· Follow-up and debriefing afterwards.
A child's capacity to participate depends on individual and cultural factors and on their previous experience as much as their age. What may be appropriate for one may not appropriate for another. Differences between children and young people in terms of age, gender, disability, ethnicity, religion and family background must be taken into account. Before becoming involved, the social situation of the child should be considered, taking account of their developmental stage, emotional stability, support networks and their family situation. For example, in some families the older children may be aware of their parents or their own HIV status, while the younger children in the family may not.
Children and young people also need time for preparation and to be supported by their peers. Where children and young people become involved in the planning of programmes, they may have to make decisions and take more responsibility than they are used to. Most children with HIV have experienced trauma and difficulties and they and their families fear disclosure, ostracism, stigmatisation and transmission. They are concerned about the impact of the disease on their emotional and material resources as well as their ability to cope. Children and young people may feel that they will not be taken seriously and wonder if they will be able to put their feelings and experiences into words. Sometimes they find it distressing to talk about painful subjects and yet at the same time find it helpful to talk with someone honestly outside their immediate family.
If children and young people are participating in a single event, such as World AIDS Day, it is important to consider the impact on them and how they will feel when the programme ends. Where appropriate, children should be helped to consider how they would deal with personal questions that they do not want to answer. Support should be available during and after the event.
Should a child participate?
Before a child or young person participates the following questions need to be considered and discussed with them.
1. Do they have an understanding of and commitment to participation?
9. What long-term follow up support has been arranged for them afterwards?
Participation should be a long-term process which is continually reviewed and adapted to meet changing needs. Where participation is viewed as a long-term process, rather than a single event, the results are more likely to be long lasting. Participation can take many different forms and there are different degrees of involvement which can be likened to the steps of a ladder, ranging from the superficial involvement of children and young people up to an equal partnership (as outlined in Figure 1).
Figure 1: How children and young people can be involved
Children can be involved in many different ways and to different degrees.
Assigned but informed
Consulted and informed
Manipulation and decoration
NOTE: it is important that programs avoid manipulation and decoration, where adults use children to promote a cause, or tokenism, where children may be involved but do not decide the means or subject of their involvement.
Based on Hart. R (1992) Children's Participation: From Tokenism to Citizenship, Florence, International Child Development Centre, UNICEF.
Projects should be interesting and fun for children and young people. At the outset children and young people themselves should decide the ways that they wish to be involved and how they want to communicate their views, experiences and needs. Children and young people should be partners from the start, with projects working with them, not just for them. Children and young people can explore creative solutions to problems that they consider to be important.
In the Philippines, a group of youth facilitators/peer counsellors was approached by the organizers of the World AIDS Campaign 1998 and requested to formulate a concept paper on the programme for the World AIDS Day launch. When the youth submitted their proposal, a lengthy discussion took place with the organizers whether the event should be held in a local community setting (the youth's proposal) or in a shopping center. Everyone agreed to the proposal of the youths and preliminary arrangements were made with the community identified for the launching, Soon after, a notice was sent out by the Launch organizers announcing that the World AIDS Day launch would be held in a local, upperclass mall, a very different concept from the original plan.
This occurrence is an example of "tokenism". The youth felt that it was not only a violation of their participation rights but a clear manifestation that there is no clear cut definition of the concept of a 'child's participation'. They had been invited to participate but not consulted when there were changes made.
Below are examples of ways that children of different ages can be involved as groups or as individuals. All programmes should aim to empower children and increase their self-esteem. The most appropriate way will depend on the purpose of participation and the views of the children. Is the purpose, for example:
· To help individual children understand more about HIV and AIDS and to cope better?
· To find out what help and services children and young people would like?
· To raise awareness of children's views and overcome public prejudice about HIV/AIDS?
Helping individual children and young people
There are many different ways of helping children and young people understand and come to terms with HIV and how it affects their lives.
Writing and pictures
Children and young people can present their ideas and experiences in writing or in pictures.
· Poetry: children and young people can express their feelings in poems, often more easily than in other writing.
· Story-telling and writing: children and young people can write about their experiences or a topic. It may help to invite them to write on a theme such as their family, their fears, or their community.
· Pictures and art: for example, children and young people can use art to express the feelings of loss and reaction to sickness. Art that the children and young people have prepared previously could be displayed.
Hong Kong 'Healthy Young Ambassadors Scheme'
"In the Hong Kong AIDS Foundation, we have a special scheme targeted at young people called the 'Healthy Young Ambassador Scheme. This scheme aims at training up young people as peer educators on AIDS. The scheme has been very successful in attracting students studying in Universities in Hong Kong and they have now become an independent group which plans for their own education programs and advises the Foundation on youth programs. "
Hong Kong AIDS Foundation
On World AIDS Day 1997, the Hong Kong AIDS Foundation organized a territory wide coloring and drawing competition which attracted more than 3500 entries. Through drawing and coloring children expressed their thoughts on HIV/AIDS and demonstrated their willingness to accept people with HIV/AIDS. Parents reviewed that they learned a lot from the children through this campaign.
Children and young people can have fun and make friends through social activities
· Clubs: in Zambia Anti-AIDS Clubs have been set up in many schools around the country. These enable children and young people to identify and decide their own ways of participating.
· Games: can bring children and young people together and allow them to interact and work together.
· Workshops and discussion groups: questions can be used to get discussions going. Questions can examine attitudes as well as knowledge and lead to suggestions in how to change attitudes and behaviour.
Drama and music
Children and young people can express themselves in movement and act out their feelings or experiences.
· Dance & mime: children and young people can express their experiences and communicate their feelings.
· Role play and drama: children and young people can create a drama to re-enact their experiences in real life or to communicate a message or point of view.
· Songs and music: children and young people can compose their own songs or lyrics to new or familiar tunes.
· Living sculptures: either in a group or alone, children can create 'living sculpture' with their own bodies of a particular event, feeling or emotion. This activity often works very well as a group and encourages co-operation.
· Puppets: children and young people can make up plays using puppets, which they may find easier because it is more anonymous. This method has been found to be useful when working with children who have been sexually abused.
Expressing oneself in a safe environment
Orphans in a rural community in the Southern Province of Zambia showed that children are happy to perform plays, compose and sing songs about HIV and AIDS, Since they are integrated into the community and feel supported by the community at grass-roots level, they feel loved, accepted and happy.
Finding out children and young people's views
In planning and developing programmes for children and young people, it is essential to talk to the participants themselves. This can be carried out in a variety of ways and can actually be done by the children.
Discussions and surveys:
· Brainstorming: all ideas are invited and discussed.
· Workshops, residential meetings, activity holidays, focus and discussion groups can create a safe environment for discussion. Children and young people themselves can conduct these groups and invite adults along to participate.
· Interviews and surveys: Children and young people can conduct the interviews themselves or self-completion questionnaires can be anonymous. Children and young people need to be involved in writing the questions.
Raising public awareness
Raising public awareness of what HIV and AIDS mean for children and young people is important, but it can put children and young people at risk of exposure. If children and young people undertake activities that identify them as living with HIV, their identity should be protected at all times.
· Testimonies, drama and demonstrations to the community, peers or family: can communicate important information and highlight issues of concern to the listeners.
· Children and young people can attend conferences and events: a group who have prepared a presentation together beforehand, can participate together and support each other after the event. Adults are needed to support children and young people in these activities not only by providing opportunities and support for their preparatory work but also by working for their inclusion as participants in conferences and events where they have traditionally been excluded or only included in a tokenistic manner.
· Children and young people's stories, poetry and pictures can be published in newspapers and newsletters. These do not have to be anonymous although if the child desires them to be so their wishes must be respected.
· T.V. and radio interviews: if anonymity is required by the children or young people participating then provision must be made for this, in the case of television a back view could be used and voices could be disguised or replaced by an actor. Where anonymity is not required the participants need to be fully aware of the possible implications.
Young people living with HIV in Africa
At the 1995 International Conference on AIDS in Marrakech, Africa, a delegation of youths from 11 countries issued a declaration of their needs and priorities.
"We strongly believe that our energy, idealism and commitment can be used to stop the further spread of the AIDS epidemic that is devastating the social and economic fabric of our countries".
Where this is the attitude, children and youth can help to change things for the better.
Involving all young people in France
Sol en Si is an agency working in France and Africa with families who are living with HIV. In 1997 it arranged a national conference for young people, advertising through town councils, schools and clubs for projects around prevention, disease, solidarity and HIV/AIDS in Africa. 350 children, aged from 6 years to 20, came to the conference and publicly presented their work. 40 groups prepared projects for the conference which included arranging social events, drawings and writings, videos, music, singing and drama.
The agency concluded that children were practical and innovative. They suggest that local authorities, national bodies and trans-national organizations can profitably involve children in making policy, especially in regard to children themselves.
Participatory programmes should be continuously reviewed, developed and improved. Evaluation does not need to be carried out by experts or outsiders. At the start it is important to decide what the programme hopes to achieve and how this will be measured. Measures for success need to be chosen by the communities and children involved, as well as by researchers, NGOs and donors.
Children and young people should be involved in all monitoring and evaluation of projects in which they are involved or services that they use. Workers need to review what they are doing at regular intervals with the children and young people themselves, if possible after each meeting. This may be done informally through discussion and then reporting back to the other staff of the organization concerned or to an advisory group specially set up to deal with children and young people's issues.
The most important indicator of successful participation by children and young people is the effect participation has had on each child. Has it developed their:
· Self-confidence and self esteem?
· Sense of responsibility, because they are being trusted to do things which are important for themselves and others?
· Sense of co-operation, because they are working together?
· Level of understanding of the issues concerned?
Another area to consider is how the views of adults have changed as a result of working with children and young people in this way. How do they now see the benefits of children and young people's participation?
Programmes need to be assessed and evaluated in collaboration with children and young people and their families. This can be done by:
· Asking children, young people and their families, perhaps using a list of questions. The materials can be evaluated by asking if children and young people enjoyed and understood them.
· Asking groups of children and young people to talk about their experiences and feelings. Check lists can help guide the discussion and keep it on track.
· Listening to what children and young people say.
· Observing how children and young people act and behave.
· Recording what is happening.
The results of the evaluation should be given to children and young people and their families. The findings should be available as soon as possible when the process is still fresh in people's minds.
Questions to ask in evaluating children and young people's activities:
1. Have children and young people and their families been involved in deciding the measure for the evaluation?
11. Aside from the effects of the activity on the participants, how might the conclusions affect other children and young people?
The theme of these guidelines is that children and young people living in a world with AIDS need to understand that it is their right to have a voice in all situations impacting on their lives and well-being.
The question that has been addressed in this booklet is: How can children and young people participate in AIDS campaigns and programmes in ethical and appropriate ways? It is clear that this is not an easy task. It is however, one that needs to be viewed as central to the sustainable improvement of children and young people's lives. If children and young people living in a world with AIDS are to be empowered as future citizens and take on responsibilities as active members of their communities their participation is paramount.
It is hoped that the ethical issues raised in promoting children and young people's appropriate participation in World AIDS Campaign Programmes will be taken into account and will provide a starting point for working with children and young people.
The United Nations Convention on the Rights of the Child is a set of universal principles set up for the protection and development of children. It is the most widely accepted instrument of human rights law, with at its core, respect for the dignity of children and is intent on the affirmation of the child as a person in his/her own right. The key principles are a child's rights to:
2. Survival and development
3. Protection and non-discrimination
The right to participate
The Convention on the Rights of the Child has at it's core the principal of child participation as a right, while at the same time recognizing the difficulties inherent in implementing these rights. The Convention notes there are risks to be dealt with, such as the deliberate or misguided exploitation of children for purposes that do not serve their best interests. Children and young people should have the right to be involved in all decisions concerning them (Article 12), to freedom of expression (Article 13), freedom of thought, conscience and religion (Article 14), and to freedom of association (Article 15). In terms of their right to participate, it is essential that children have the right to privacy (Article 16) and access to information (Article 17).
The right to survive and to develop
These rights cover all those aspects which children require in order to reach their full potential from education and play, to freedom of thought, conscience and religion. Children have a right to information and opportunities to develop life skills, and children should have access to HIV prevention education, the means to protect themselves from the impact of HIV, and the skills to negotiate safer sex practices and therefore be protected from infection.
Our responsibility in this regard extends to respecting the rights of children to information, education and services, as well as to paying attention to the circumstances that make them especially vulnerable to exploitation and abuse. If the Convention is understood and implemented, it can provide the backbone for reducing children's vulnerability to HIV infection and preventing the relentless spread of the epidemic.
The right to protection and nondiscrimination
Article 2 states that children have a right to be protected from discrimination and exploitation irrespective of their HIV status or that of their family members. Children should not experience discrimination because of their HIV status - in education, leisure, or cultural activities. Children have a right to access health and social services on an equitable basis, irrespective of their HIV status or that of members of their families. All infected children should be provided with adequate HIV treatment and care. Attention must be paid to ensure orphans receive adequate support services.
Children living with HIV in the family continue to experience discrimination, exploitation and abuse in the extreme in most countries. Violating children's rights in this way, because of either real or perceived HIV status of the child or his/her family members, adds yet another load to the tremendous burden these children are already carrying. Often it is the attitude of society which dis-empowers, not the illness itself.
Children living in a world with AIDS are vulnerable. If they live in a family where an adult is infected they may experience discrimination because of this, or indeed if they themselves are infected they may experience discrimination through the denial or limitations of their rights to education, health and social services. Children, growing up now, have to live with a lifetime of risk of HIV infection.
Source: UNAIDS (1997) 'Children's Rights in a World with AIDS', World AIDS Day Campaign Information Sheets, Geneva.
Copies of the UN Convention on the Rights of the Child are available from UNICEF and UNAIDS offices.
Allan Ragi: Chair of CAINN
Kenya AIDS NGO's Consortium
Chaka Road, PO Box 69866
Family Health Trust
P/B E 243 35179 Delair Road
Tel: 260 1222834/223589
Fax: 260 1222834
Hong Kong AIDS Foundation
5/F Shaukeiwan Jockey Club Clinic
8 Chai Wan Road, Shaukeiwan
Tel: 852 2560 8528
Fax: 852 2560 4154
Home Page: http://www.aids.org.hk/
Precious Jewels Ministry
PO Box 3356
Tel/Fax: 63 2 921 8076
Romanian Angel Appeal
Rodiei Street 52
Bucharest, Sect 3
European Forum on HIV/AIDS Children & Families
111-117 Lancaster Road
London ENGLAND W 11 1 QT
Tel: 0181 383 5697
Fax: 0181 383 5620
Hummingbird Kids Society
P.O. box 54024
Pacific Centre N.
701 Granville Street
Canada BC V7Y 1BO
ASIA Interagency Coalition on AIDS and Development (ICAD),
180 Argyle Avenue
Ontario, CANADA K2P I B4 Tel: 613 788 1508
Fax: 613 788 5052
Armando de Paula
Grupo de Apoio a Prevencao a AIDS-Ceara (GAPA-CE)
Rua Castro e Silva, 121 - sala 308 - Centro
60030-010 Fortaleza-CE Brazil
Tel: 55 85 2534159