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close this bookGuidelines for Children's Participation in HIV/AIDS Programs (The Children and AIDS International Non-Government Organization Network (CAINN)) (UNAIDS, 1999, 29 p.)
View the document(introduction...)
View the documentAcknowledgements
View the documentIntroduction
View the documentWhy Children and Young People Should Participate
View the documentMeeting the Challenge
View the documentWays Children and Young People Can Participate
View the documentDoing It Better
View the documentAnnex - The UN Convention on the Rights of the Child: Participation and the World AIDS Campaign
View the documentChildren and AIDS International NGO Network (CAINN)

Meeting the Challenge


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.

2. Children's right to decide for themselves should be respected at all times and care taken to ensure that the children understand the implications of their participation and know that they can refuse to participate.

3. Children's rights to confidentiality and freedom from discrimination should not be compromised by participating,

4. Children should participate in an environment where they feel safe with their own peers so that they do not feel threatened, frightened or used.

5. Children should not be portrayed in a negative and disadvantaged way.

6. Children should not be exploited for commercial, medical or research purposes.

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?

2. Do they have a knowledge and understanding of HIV and AIDS?

3. Do they have clear reasons for participating?

4. What preparation have they had?

5. Are they part of a group which can provide peer support?

6. Do they have the support of parents, guardians or others important to them?

7. Do they understand the possible adverse consequences of participating?

8. Do they understand that they can refuse to participate at any time before or during the programme?

9. What long-term follow up support has been arranged for them afterwards?