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March 2008-February 2009 |
Introduction
The aim of this project was to strengthen the relationships between parents and children affected by HIV/AIDS, and to minimize children's psychological trauma, as well as their risk of infection. Early diagnosis of parents' HIV status, as well as disclosure to their children and other family members is vital. Most parents do not find out that they are HIV positive until they or one of their children is clinically diagnosed with HIV-related illnesses. The earlier parents' infection status is known, the more time they will have to plan for their children's future, in particular to find another family or person who will be able to care for them. In addition, parents have more time to pass on their skills and knowledge to their children, and to teach them how to support themselves. Knowing their infection status when they are still well helps parents to prepare their children and themselves emotionally for their deaths. The longer parents can work and the longer they can be helped to stay well and nurture and raise their children, the less pain and trauma the children will experience.
Beneficiaries
The project's beneficiaries were 12 children and adolescents (aged 5 - 18) and 10 parents from Canning, Bishnupur I and Bishnupur II. The parents were all HIV positive; three of the children were HIV positive. Five of the adults were widowed; the other five had partners. All 12 children had family members with HIV/AIDS.
Challenges
People were reluctant to disclose their diagnosis due to the stigma surrounding HIV/AIDS. Another difficulty was that some of the activities planned at CINI centres were not feasible owing to the distance of the sites; therefore the strategy of follow up and interaction in the community or through home visits was explored.
Programme elements
- Encouraging parents to tell their children about their HIV diagnosis
- Sessions aimed at improving relationships and communication between parents and children
- Planning for children's future care/selection of guardians
- Prevention of infection whilst caring for sick parents or siblings
- Minimisation of children's psychological trauma through counselling and peer based discussions
- Memory work (collecting memories of childhood, important information about family and friends, parents' values, ideals and hopes for their children, traditions and special events in the family, to strengthen children's sense of identity and to help them to understand their family background and circumstances)
- Life skills education for children and adolescents, including nutrition, hygiene and sex education
- Education for parents on how to discuss issues relating to HIV/AIDS and sexuality with children of different age groups.
Progress to date
- Project beneficiaries: 12 children and adolescents and 10 parents
- Number of sessions held: 22
- 7 parents told their children about their HIV diagnosis
- 6 parents have made plans to safeguard the future of their children
- 7 adolescents are taking care of their parents and of younger siblings
- 4 children have been identified as peer leaders
The project will continue for another six months; the final results will be available on completion.
Wider benefits of the project
Parent-child clubs have been established in several villages, to enable other children and parents to benefit from the project's findings. The clubs act as safe havens for all children in their area. In order to avoid stigma, the clubs' signs do not explicitly mention HIV/AIDS. The clubs' major objectives are increasing children's involvement and creativity, and improving communication between parents and children.
Case study
Kakoli Goswami (name changed for confidentiality) is a HIV positive adolescent girl, who has participated in the project. When Kakoli joined the project, she was quiet and withdrawn, and rarely smiled. She hated life - she saw life as a regime of medication and rules for healthy living, and rebelled against it by refusing to have a fixed routine and to take her medication regularly. At the group sessions at CINI, her identity crisis was evident, as she would often go to the younger children's group and start fights or dominate their games. However, in her own age group's sessions she barely participated in the games. CINI staff arranged individual creative sessions for her, and found that she enjoyed painting, listening to music and reflecting on topics. Kakoli's emotions were explored through the creative sessions. Her familial relationships, her feelings of despair and hopelessness, and the fear of impending death were starkly present in her paintings. She started verbally expressing her emotions for the first time, e.g. "what is the use of taking medication anyway? I will die like my father." Other sessions involved role play on life skills, self awareness and values, problem solving and decision making, physiological and mental changes during adolescence, HIV and AIDS and related issues, marriage, conception and family planning. These sessions answered many of her questions about life. Equipped with this information, Kakoli felt more responsible for maintaining a healthy lifestyle. She became more self assured and confident in making decisions.
CINI's sessions for parents stressed the importance of free and open communication between parents and their children. Kakoli and her mother started talking to each other about sexuality and growing up, which made Kakoli feel more emotionally close, secure and mature. Kunti, her mother said, "I put aside some time just for talking to my daughter about life, and I feel light after doing so ... we are more like friends now." Her mother disclosed her HIV positive status to Kakoli. For the first time, Kakoli started looking beyond herself and understanding the needs of her mother as both a patient and a human being. Kakoli said, "I like helping my mother with cooking, washing and cleaning. She needs some rest." She started taking responsibility for her family and siblings. Through practical sessions on balanced diet and healthier ways of cooking, Kakoli accepted the value of eating regular, nutritionally rich meals. Her involvement in the project's ongoing sessions has improved in regularity and involvement. She has become an enthusiastic participant, helps other children and has become a member of the children's drama group, which aims to generate awareness and advocates for children's human rights.
Kakoli has become an active member of the parent-child club committee. She is, in fact, the only female committee member in her male dominated village community. During the project sessions, Kakoli was able to engage with her emotions and to develop as a person. Kakoli has beaten the feelings of hopelessness towards a short life. She is now aiming to become a CINI social worker.
Children's group session |
Parent-child club |
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