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Building Blocks: AsiaBriefing notes for communities working with orphans and vulnerable children

Care and psychosocial support

C A R E A N DP S Y C H O S O C I A LS U P P O R T Acknowledgements

The Alliance would like to thank all those who contributed tothis publication, including:

Members of the development group for Building Blocks:Asia briefing notes

Aing Chamroeun, National Prosperity Association (NAPA),Cambodia; Cheng Chhor Virith, SCUK, Cambodia; ChiranuchPremchaiporn, AIDS ACCESS Foundation, Thailand; ChutimaSaisaengjan, AIDS Network Development Foundation(AIDSnet), Thailand; Dr Sangeeta Kaul, MAMTA, India; Dr SokSophal, Friends, Cambodia; Dr Srey Mony, World Vision,Cambodia; Himalini Varma, Thoughtshop Foundation, India;Im Phallay, independent consultant, Cambodia; IshdeepKohli, independent consultant, India; Jarukanya Rearnkham,AIDS Development Foundation (AIDSNet), Thailand; KanyaratKlumthanom, Thailand MOPH-US CDC Collaboration (TUC),Thailand; Lim Vannak, independent consultant, Cambodia;Ma Kol Chenda, KHANA, Cambodia; Madhavi Shinde,Committed Communities Development Trust, India; MinaxiShukla, CHETNA, India; Montira Montiantong, SpecialProjects Office, Office of the National Primary EducationCommission, Ministry of Education, Thailand; Ms VaijyantiBagwe, Committed Communities Development Trust, India;Namphung Plangruan, AIDS ACCESS Foundation, Thailand;Neelam Dang, Women’s Action Group – Chelsea, India; NethSan Sothy, NCHADS, Cambodia; Nirmala Antony, YoungWomen’s Christian Association (YWCA), India; NisacholOunjit, Médecins Sans Frontières – Belgium, Thailand; PratinDharmarak, Family Health International, Cambodia; PrudenceBorthwick, UNICEF Regional Office Thailand; San Van Din,Partners in Compassion, Cambodia; Shruti Shah, CHETNA,India; Sirinate Piyajitpirat, AIDS Network DevelopmentFoundation (AIDSnet), Thailand; Srilada Ketwong, Foundationfor Slum Child Care, Thailand; Suchada Suwanthes,NORTHNET Foundation, Thailand; Sum Sitha, CARE,Cambodia; Usa Khierwrod, Help Age International, Thailand;Uy Soung Chhan Sothy, Indradevi Association (IDA),Cambodia; Veena Johari, Lawyers Collective HIV/AIDS Unit,India; Wichitra Apateerapong, The HIV Netherlands AustraliaThailand Research Center Collaboration (HIV-NAT), Thailand.

What is the International HIV/AIDSAlliance?

The International HIV/AIDS Alliance (theAlliance) is the European Union’s largestHIV-focused development organisation. Wewere established in 1993 as an internationalnon-governmental organisation to supportcommunity action on HIV/AIDS. Since then,we have worked with over 2,000community-based organisations in over 40countries, reaching some of the poorest andmost vulnerable communities with HIVprevention, care and support and improvedaccess to treatment.

© Text: International HIV/AIDS Alliance, 2006© Illustrations: Centre for Health Education

Training and Nutrition Awareness(CHETNA), 2005

Information and illustration contained withinthis publication may be freely reproduced,published or otherwise used for non-profitpurposes without permission from theInternational HIV/AIDS Alliance or CHETNA.However, the International HIV/AIDS Allianceand CHETNA request that they be cited asthe source of the information and/orillustrations and CHETNA would like to benotified of their use at this address:[email protected]

This report is made possible by thegenerous support of the American peoplethrough the United States Agency forInternational Development (USAID). Thecontents are the responsibility of theInternational HIV/AIDS Alliance and do notnecessarily reflect the views of USAID or theUnited States Government.

C A R E A N DP S Y C H O S O C I A LS U P P O R T

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Acknowledgements

Members of the international advisory board for BuildingBlocks: Asia briefing notes

John Williamson, Displaced Children and Orphans Fund,USA; Linda Sussman, independent consultant, India; EtiennePoirot, UNICEF, Cambodia; Amaya Gillespie, United NationsSecretary General's Study on Violence against Children; InduCapoor, CHETNA, India; Sirinate Piyajitpirat, AIDSNet,Thailand; Pok Panhavichetr, KHANA, Cambodia; Dr Jintanat,HIV-NAT, The Thai Red Cross AIDS Research Center,Thailand; Prudence Borthwick, UNICEF, Bangkok RegionalOffice.

International HIV/AIDS Alliance staff members andconsultants


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Background

1 The term ‘children affected by HIV and AIDS’ includes children living with HIV as well as those who have lost

family members to AIDS or who are living in families or communities affected by HIV and AIDS.

The International HIV/AIDS Alliance, with funding from USAID,has produced this series of practical briefing notes to assistpolicy-makers, programme managers, non-governmentalorganisations (NGOs), community-based organisations(CBOs), local government and communities to respond to theneeds of children affected by HIV and AIDS1 in Asia. Thebriefing notes focus on how programmes can strengthen thecapacity of children, families and communities. They do notinclude general information on HIV and AIDS, as this isavailable in many other publications.

These briefing notes are part of a set of seven, comprising sixtopics and an overview:

• Health and nutrition• Livelihoods and economic strengthening• Education and training• Care and psychosocial support• Social inclusion• Protection

All these areas are important and should be consideredtogether in an integrated response. Each briefing noteintroduces issues, and provides principles and strategies forguiding the response, while also offering examples of bestpractice from programme experience. The strategies reflectinternational good practice and the experience of peopleworking with orphans and vulnerable children in Asia. Someof the guides also include case studies from Africa toillustrate practical actions that can be taken.

The briefing notes were developed through a highlyparticipatory process, guided by an international advisoryboard. Initial content for the notes was developed during aworkshop in Chiang Mai by members of the developmentgroup for Building Blocks: Asia, acknowledged above. Thiswas then written up in English by a consultant, Kathy Attawell,and then translated, reviewed and revised in Cambodia, Indiaand Thailand. These revised editions are available in Khmer,Hindi and Thai – see www.aidsalliance.org for moreinformation on these publications. This English edition is basedon the original content developed during the Chiang Maiworkshop, with revisions and editions based on the country-level reviews and feedback from the international advisoryboard. Examples and case studies from this process havebeen noted as coming from a ‘Member of the developmentgroup for Building Blocks: Asia’.


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Background

The briefing notes in Hindi

The briefing notes are all divided into three sections:

IntroductionThis section explains the topic and how it relates to childrenand families affected by HIV and AIDS.

IssuesAn outline of the impact of HIV/AIDS on children.

Principles and strategiesGuidelines and possible ways of taking action to strengthensupport for orphans and vulnerable children.


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Introduction

Children’s psychosocial and emotional needs are asimportant as their physical needs. Caring for a sick parent,living in an HIV or AIDS-affected household, or losing one orboth parents, have a powerful effect on children’spsychological and emotional well-being. Programmes forchildren affected by HIV and AIDS should pay as muchattention to children’s needs for love, affection andunderstanding as they do to their needs for shelter, food and clothing.

Parental illness and death is traumatic, stressful and sad forchildren. Children are often encouraged to keep theiremotions to themselves or may find it difficult to express theirfeelings. Approaches to counselling that are appropriate forchildren are needed. Helping children cope and to talk abouthow they feel at an early stage in the process (‘earlyintervention’) is essential to prevent long-term psychologicaldamage. Children who have lost their parents often also losetheir home, friends and schooling. Their emotional distress isworsened by poverty, stigma and discrimination andincreased responsibilities, which may prevent them fromfeeling that they are part of the community. Programmesneed to encourage communities to provide children withpractical help and to promote social integration of childrenaffected by HIV and AIDS

Due to the strong links between poverty and psychosocialproblems, organisations and communities need to addressunderlying causes as well as the problems themselves.Making sure a child has enough to eat, a caring andsupportive family and community environment, and can go toschool, are some of the most important interventions toprevent or address psychosocial needs. For psychologicalwell-being, children need:

• safety• adequate access to the physical and material requirements

for health• social support and integration• emotional support• age-appropriate opportunities to learn and achieve

developmental tasks• personal and cultural identity

opportunities for spiritual expression.

Thus programmes can address any or all of these factors tosupport children.


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Introduction

Caregivers themselves also need psychosocial and emotionalsupport to help them cope with their own grief, fears, stressand worries about the future, and to enable them to givechildren the best possible care.

This guide is divided into two sections:

Issues

This section considers how HIV and AIDS affects the care ofchildren and their psychosocial and emotional well-being, andexplains why programmes need to pay attention to thepsychosocial and emotional needs of children affected by HIVand AIDS.

Issues include:

• Family poverty and stress• Anxiety and worry• Stigma, discrimination and rejection• Feelings and behaviour• Loss of home and identity• Loss of childhood• Lack of adult care and support• Long-term psychological problems• Coping with HIV

Principles and strategies

This section outlines principles of programming to providecare and psychosocial support, and describes possible waysof taking action to address the needs of children affected byHIV and AIDS. Case study examples are included to illustratepractical application of some of these principles andstrategies.

Principle 1Protect the rights of children

Principle 2Promote early intervention

Principle 3Strengthen the capacity of families and communities

Principle 4Support family and community models of care

Principle 5Help children to help themselves


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Issues

HIV and AIDS affects the care and psychosocial andemotional well-being of children with sick parents, childrenwho have lost their parents, and children with HIV. Theimpact on children includes:

Family poverty and stress

Families affected by HIV and AIDS have to cope with manyproblems. Living in poverty causes psychological stress foradults and children. Parents in affected families may be toobusy or worried to give children proper care or to talk tothem about what is happening. Sometimes HIV and AIDScause domestic violence or family breakdown. Parents mayseparate or divorce, or in extreme cases an HIV-positivewoman may be thrown out of the house. Family stress andseparation has a serious impact on children’s emotionalhealth.

Anxiety and worry

Children worry about whether or not sick parents will die,and what will happen to them, where they will live and who

will take care of them afterwards. Sometimes theyworry that they have HIV and will die themselves. If

adults do not explain to children what ishappening or talk to them about who will care

for them in future, children maybecome very anxious.

Children worry aboutwhether sick parents will die

In response to a questionnaire whererespondents had to fill in words tocomplete the sentences, a 12-year-old boywhose parents had died, wrote:“What Iworry about most is whether I have AIDS ornot. I am afraid of getting AIDS. My friendsdo not know that I have HIV. About myfriends in school, I feel that they hate me.The happiest time I have ever had was whenmy mama and papa were here together. If Ihad a magic spell I would make my mamaand papa to be alive. Now I am very sadand lonely”.Member of the development group forBuilding Blocks: Asia

C A R E A N DP S Y C H O S O C I A LS U P P O R T Issues

Stigma, discrimination and rejection

Children with HIV commonly experience stigma anddiscrimination from neighbours, relatives or other children.Children from families affected by HIV and AIDS may bestigmatised and discriminated against because peopleassume that they too have HIV. Hostility and rejectionincrease children’s psychological stress. They may feelisolated and unable to talk about their problems outside thehome because of the shame associated with HIV and AIDS.Sometimes parents with HIV physically distance themselvesfrom their children because they do not understand fully howthe virus is transmitted, and are afraid of infecting them. Thismakes children feel unloved and rejected, especially if theydo not know that their parents have HIV.

Feelings and behaviour

Children who have lost their parents or siblings may experiencefeelings of sadness, anger and guilt. Children who aredistressed may show aggressive, difficult or disturbedbehaviour. If they are punished for their behaviour, this adds totheir distress. Older children may feel angry with their parentsfor dying or with whoever they think has caused their parents todie. They may lose their confidence or self-esteem. Youngerchildren may lose their appetite. Sometimes children mistakenlythink that they are to blame when their parents are ill or die, orfeel guilty because they were unable to keep their parents alive.

Loss of home and identity

Children may lose their home if their parents divorce or die.Sometimes when the father dies, the mother has to return toher family home, taking the children with her. Children whohave lost both parents may move away from their home andcommunity to live with relatives in an unfamiliar environment.They may also be separated from their siblings. Losingcontact with their brothers or sisters and friends in additionto losing their parents is very traumatic for children.

Loss of childhood

Children caring for sick parents or who are living withoutparents have to take on adult responsibilities, such as earningmoney, preparing meals and looking after younger brothers andsisters. They do not have the time or energy for normalchildhood activities that are important for their psychologicaland emotional development, like going to school or playingwith friends.

A 14-year-old girl described how sheworried about whether her mother had HIV.“What I remember from when I was ingrade 2 is the gossip about my mother andAIDS.I didn’t know what AIDS was, exceptthat it must surely be a bad thing, but mymother did not say anything about it. WhenI was older I was sure that my mother hadAIDS, because I saw some PLHA groupleaflets. But it was not until I was in grade8 that she talked to me about AIDS. Sheexplained that it could not be easilytransmitted and was not a frightening thing.Then she told me she was infected, andthat she had not said anything when I wasyounger because she did not want to makeme sad or worried. But I feel that keeping itsecret made me feel more sad and worried.Member of the development group forBuilding Blocks: Asia

A four-year-old boy was living with hismother and grandmother. The father haddied of AIDS before the boy was born. The mother told people that she did notlove her son because she was angry withhis father for infecting her with HIV. Hefound it difficult to stay still, and his motheroften beat him very hard. Sometimes theboy fought back by biting her. When hewas upset he stayed away from his friends.When he saw other fathers he called them“Papa” like his friends.Orchid Clinic, Chiang Mai (personalcommunication)

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C A R E A N DP S Y C H O S O C I A LS U P P O R T Issues

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Lack of adult care and support

Children caring for sick parents are often left to cope alonewithout social and emotional support. After their parents die,they are left to cope with younger brothers and sisters orelderly grandparents. Orphaned children miss out on parentallove, protection, advice and encouragement, and may lackadult support to help them develop social skills or a sense ofself. Sometimes children sent to live with relatives areneglected or treated badly. Sometimes relatives refuse tocare for children whose parents have died of AIDS or childrenwith HIV, and these children may be abandoned or placed ininstitutions.

Long-term psychological problems

In some cultures, adults do not discuss illness or death withyoung children or find it difficult to talk to children aboutthese subjects. They may not be aware of children’spsychological and emotional needs or know how to helpchildren grieve. Without appropriate counselling and thechance to mourn their parents or to talk about how they feel,children may experience psychological problems later in lifeor try to cope in ways that are harmful, such as abusingdrugs or alcohol. In many settings, there is a lack ofspecialised counselling and support services for children.

Coping with HIV

Children with HIV who are often ill may feel afraid or worried.They need special help to cope with and come to terms withtheir illness, to learn to live positively with HIV, to deal withstigma and discrimination and prepare for the future.

A 16-year-old girl is working in town andliving with her employer, 15 kilometresaway from her family home, and she goeshome at weekends. Her parents diedseveral years ago and she is responsiblefor her 80-year-old grandmother and 12-year-old brother, who has HIV infection.Although her brother started antiretroviraltreatment, he does not always take hismedicines correctly because there is noone to supervise him. Sometimes she hasto take her brother to the hospital. Shealways looks sad and seems more maturethan other girls of the same age.Member of the development group forBuilding Blocks: Asia

A 10-year-old girl with HIV said: “A longtime ago, I could not remember at whatage, I got herpes. My mother took me tothe hospital and she told me that I hadAIDS just like her. At that moment I did notwant to think about AIDS. I had a headache.No friends played with me and they fearedme because they were afraid of gettingAIDS from me. I also worry that my friendswill tease me. AIDS makes my mother sickand will make her die. I used to think aboutcommitting suicide.”AIDSNet newsletter, Vol.4, April–September2003

Children need someone to talk to about their feelings


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Principles & strategies

Protect the rights of children

Programmes should centre on the best interests of the child.Addressing children’s needs for psychosocial and emotionalsupport is as important as addressing their physical needs forfood, shelter and clothes. Children affected by HIV and AIDShave the same rights to identity, love, leisure and individualdevelopment as other children. All children, especially thosewho are vulnerable, need to feel secure and valued.

Strategies for action

Take a holistic approach, promoting collaboration betweenhealth, education and social welfare services andorganisations providing counselling and support services.

Raise community awareness about the importance ofpsychosocial and emotional support for children.

Promote integration of children affected by HIV and AIDS inthe community. Possible actions include:

- Keep children with HIV together with other children inschools or health facilities.

- Support efforts to tackle stigma and discrimination.

1THE CONVENTION ON THE RIGHTSOF THE CHILD STATES:

• Children have the right to a name,nationality and sense of identity.

• Children have the right to affection,love and understanding.

• Children have the right toopportunities for play and recreation.

• Children have the right to be a usefulmember of society and to developindividual abilities.

Children have rights too

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•

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We have rights!

Us too!


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- Establish children’s clubs and play groups for all children inthe community.

- Involve children in community development projects togive them opportunities to interact with adults and otherchildren.

Encourage and support parents to register their children’sbirths, so that they have an official name and identity.

Make sure that children are aware of their rights, andpromote the active participation of children in decisionsabout their lives.

Promote early intervention

Early intervention can prevent adverse effects on children’slong-term development. It is important to prepare children forparental death, and to identify and help children withpsychosocial and emotional needs before they developserious problems.


Help parents to plan for their children’s future while they arestill well, and to include children in decisions. Possibleactions include:

- Assist parents to make a legally binding Will that protectschildren’s inheritance and states who will care for thechildren.

- Involve community leaders in encouraging families todiscuss the future of children.

- Document the wishes of parents and children about whowill care for children in the future.

- Ensure that contact information for relatives is recorded before parents die.

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In Thailand, an HIV-positive child and hisaunt fought against discrimination at hisschool, with support from the Centre forAIDS Rights and MSF-Belgium. “Now, thereis no problem at my school. I have the rightto study.”Member of the development group forBuilding Blocks: Asia

In India, Project CHILD works with childrenin affected households where parents arevery sick to prepare them to cope withparental death, if the parents havedisclosed their HIV status to the children.All children in affected households aregiven skills training in first aid, householdbudgeting, home management and dealingwith crisis situations.Member of the development group forBuilding Blocks: Asia

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Making sure that contact informationfor relatives is available to children

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Prepare children and parents for death. Possible actionsinclude:

- Encourage parents to be open and truthful, and to talk abouttheir illness and possible death with children, to help preparethem to cope with grief and loss.

- Give parents advice about how to talk to their childrenabout difficult issues in a way that they can understandand that is appropriate to the needs of the individual child.

- Provide counselling services for children in and out ofschool and for parents.

- Put together a ‘memory box’ for children that containsinformation about the family and things that are relevant tothe child’s history and background, or encourage parents towrite a ‘memory book’ with their children (see Usefulresources for more information).

- Encourage religious leaders and traditional healers toprovide spiritual support that is appropriate for children.

- Give children practical information about what is going tohappen to them, where they will live, who will care for themand where they will go to school.

- Make sure that children visit and know their extendedfamily well while the parents are still alive, so that childrenfeel part of their larger family.

- Train carers, teachers and health workers to recognise theearly signs of developmental, psychological and emotionalproblems in children.

One NGO in Cambodia monitors childrenwhose parents are sick and encouragesparents to decide who will care for thechildren after they die. The organisationalso provides counselling to help childrenbefore and after their parents die, andintervenes when necessary to ensure thatchildren are not abandoned. In one case,relatives only wanted to take the youngerof two orphaned children, suggesting thatthe older child go to a home. The NGOnegotiated with the family, explaining theimportance of keeping brothers and sisterstogether.Member of the development group forBuilding Blocks: Asia

A woman who was the leader of a group of people living with HIV in Thailanddecided to tell her two children aged sevenand twelve years about her HIV status. She believed that the mother should be the person to tell her children, help themlearn about HIV and AIDS and how tolessen its impact. She planned carefullyhow to prepare other family members andher children. To prepare her children, sheintroduced information about HIV and AIDS in daily conversation in a natural andinformal manner, telling them about HIVtransmission and treatments available forpeople living with HIV. She also took thechildren to visit friends with HIV who wereliving normally with other people in thecommunity. After several months, when she felt confident that her daughters had agood understanding, she told them abouther HIV status. She explained that theywould stay together, that she was takinggood care of her health and feeling well.She also told them that she was not angryor upset. She prepared a notebook ofmemories with drawings about herself andtheir father, and their feelings about theirchildren. She continued to write in thenotebook, including more stories andinformation, and letting her daughters readit periodically, observing their reactions. Shealso talked to them about future plans andwhat they would do in certain situations.These two children have grown up notfeeling that HIV and AIDS are abnormal orfrightening. – Member of the developmentgroup for Building Blocks: Asia

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Parents prepare for the future by making a Will


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Strengthen the capacity of families and communities

Families and communities are the most important resourcefor providing children with psychosocial and emotionalsupport. Programmes should focus on strengthening thecapacity of families and communities to care for children,rather than targeting children directly. Support for families canhelp to avoid children being abandoned or placed ininstitutions. It is also important to provide psychosocial andemotional support for carers such as grandparents, to helpthem cope with their own grief, stress and social isolation,and with looking after children with psychological andemotional problems.

Also in Thailand, the AIDS Accessfoundation, AIDSNet Foundation and MSF-Belgium have worked together to developa curriculum on communicating withchildren affected by HIV and AIDS,including understanding how to talk tochildren and the cultural context of therelationship between children and adults,and to conduct training for people whowork with children. Methods such asdrawing pictures, telling stories and role-play are used to help identify and addressissues that are worrying children.Member of the development group forBuilding Blocks: Asia

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A community worker educates a family about caring for children’s emotional needs.


Educate communities about HIV and AIDS to reduce fear andencourage them to take responsibility for caring for childrenaffected by HIV and AIDS.

Provide families with practical support so that they cancontinue to take care of their children. Possible actionsinclude:

- Give practical advice about caring for children with HIV,including preventing the transmission of HIV or otherinfections. Provide materials to help with this, such as latexgloves and disinfectant.

- Establish day care centres or nurseries for pre-schoolchildren.

•

In some rural areas of Cambodia, relativeswere reluctant to take responsibility fororphans, wanting to send them toorphanages or Buddhist temples. The mainreason was lack of understanding aboutHIV and AIDS and thus fear that they would become infected with HIV throughlooking after these children. Volunteermembers of the Kien Kes Health EducationNetwork have helped grandparents andother relatives to understand that HIVcannot be transmitted through normal dailycontact, and people are now agreeing totake care of orphaned children in thefamily. Member of the development groupfor Building Blocks: Asia

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- Organise respite care and support during times of familycrisis to prevent children being abandoned or left ininstitutions.

- Strengthen the capacity of families to meet their ownlivelihood needs.

- Provide emergency food and material support to extremelyvulnerable households that are not able to meet their ownneeds.

- Mobilise organised monitoring and care by communitymembers to particularly vulnerable children and theirhouseholds.

Ensure that carers receive psychological and emotionalsupport. Possible actions include:

- Encourage neighbours, relatives and other communitymembers to provide moral support and social contact; forexample, through informal visits, sharing meals, invitationsto community activities.

- Establish peer support groups; for example, older people’sassociations.

- Ensure the social integration of vulnerable children in socialand cultural activities such as sports, youth groups andreligious activities.

- Train home-based care teams to provide psychological andemotional support during home visits.

- Involve religious leaders and organisations in providing andmobilising support.

- Build the capacity of groups of people living with HIV tohelp affected families.

- Train government and NGO staff in counselling skills.- Facilitate access to family and individual counselling

services, where possible.

In Thailand, the Orchid Clinic found thatmost families affected by HIV and AIDSwant to continue caring for their children,but sometimes find it hard to cope. TheClinic established a day care centre,supported by the government, and this hasprevented parents from abandoning theirchildren or placing them in institutions. Daycare is less expensive than institutionalcare and enables children to stay with theirfamilies. The centre takes a comprehensiveapproach, encompassing nutrition,emotional care and child development, andreferrals for medical care. It also follows upchildren after they go on to school, toencourage teachers to be supportive. Member of the development group forBuilding Blocks: Asia

The Indian NGO, Committed CommunitiesDevelopment Trust, runs a crisisintervention centre, which provides short-term residential care and support for HIV-positive women and their children,including promoting mother-child bondingand coping skills, while they look forlonger-term alternatives in the community.There is also a drop-in centre wherewomen can obtain psychosocial support. Member of the development group forBuilding Blocks: Asia

In India, Project CHILD recognised that itwas often grandparents who were takingresponsibility for looking after children, andthat they had their own care and supportneeds. Following consultation with oldercarers, the project established a supportgroup to help them share experiences andproblems, cope with their responsibilitiesand take better care of their grandchildren.Member of the development group forBuilding Blocks: Asia

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Involve religious leaders in mobilising support


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The Vietnam Women’s Union, in partnershipwith Help Age International, has establishedclubs for older women who are caring fororphaned grandchildren. These clubs are aforum for mutual support, sharingexperience and knowledge about HIV andAIDS, and care of the sick, as well a sourceof loans for income-generation activities.Club members visit each other and otheraffected families, and educate thecommunity to reduce discrimination. Economic and Social Commission for Asiaand the Pacific. HIV/AIDS prevention, careand support: stories from the community,UN and AusAID

In Thailand, some groups of people living withHIV have expanded to include relatives andalso those caring for affected children. Somegroups are organising counselling sessionsfor people taking care of children, providingadvice about childcare, promoting mutualsupport among caretakers, organisingrecreational activities for children who arebeing cared for by their grandparents,promoting better communication betweencaretakers and children, and encouraging thecommunity to help grandparents whoseability to take care of children is limited.Member of the development group forBuilding Blocks: Asia

In Cambodia, a network of volunteers ledby a Buddhist monk carries out home visitsto give psychosocial and emotional supportto affected families and children. TheSangha Metta project in Thailand trainsBuddhist monks and nuns to provideemotional support, comfort and counsellingto affected children and families to helpthem cope with grief after death as well asongoing problems. Support is providedthrough home visits, temples, which areused as counselling centres, and instructionin meditation to reduce emotional distress.

Temples are also an important source ofsupport for older carers in Thailand, helpingto reduce stigma, isolation and emotionalstress and promoting peer support andinteraction between families. Member of the development group forBuilding Blocks: Asia

Help carers to give children psychosocial and emotionalsupport. Possible actions include:

- Help carers to understand stages of childhood developmentin locally and culturally meaningful terms.

- Offer training in parenting and communication skills.- Develop strategies to support and encourage the social

integration of children who are withdrawn, depressed oraggressive.

- Help children to deal with stigma, discrimination andrejection.

- Encourage carers to make children feel special and loved;for example, mark children’s birthdays with cards, gifts or aspecial meal.

Sensitise communities to children’s psychosocial andemotional needs.

Sensitise communities and help them to mobilise their ownefforts to reduce stigma and discrimination related to HIV andAIDS or orphans; for example, through drama, songs,Participatory Learning in Action (PLA) exercises or role-plays(see Building Blocks in Practice, in Useful resources list).

Encourage communities to provide children with materials andopportunities for play and recreation, and to promote socialintegration. Possible actions include:

- Offer training to community groups in play therapy.- Establish a community ‘toy bank’.- Build a play area or children’s corner.- Organise sports, games and picnics.- Involve children in planning and organising community

cultural events and festivals.

Use existing community structures and traditional methods ofproviding psychosocial and emotional support to children.Possible actions include:

- Encourage religious organisations, village elders, traditionalhealers, community groups and women’s and youth groupsto identify vulnerable children and involve them incommunity activities.

- Sensitise health workers and teachers to the psychosocialand emotional needs of children.

- Advocate with local government authorities and NGOs toaddress children’s psychosocial and emotional needs intheir programmes.

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Support family and community models of care

Children develop better socially and emotionally in a caringfamily environment. They also need to feel part of thecommunity and to have opportunities for social interaction.Approaches to providing care for orphans should be sociallyand culturally acceptable and appropriate to the needs ofchildren. Institutional care is rarely in the best interests ofchildren and should be a last resort. Children in institutionsare unlikely to get opportunities to learn life skills or toprepare for adult life in the community in the way they wouldin a family environment. The quality of care in some children’shomes is poor, and does not provide the love, attachmentand individual attention that children need.

Organise group games for children

In Cambodia, a project supported by CAREhas organised a structured playgroup for allchildren in the community, with activitiesincluding dance, drama, quizzes, andcompetitions. – Member of the developmentgroup for Building Blocks: Asia

Also in Cambodia, the Lost Child Projectworks with street children and children whohave been exploited and abused. The projectuses play as a starting point, since manychildren have suffered great trauma and have given up playing. Using creativemethods such as drama and stories helps children to express themselves andregain their sense of self. – Member of thedevelopment group for Building Blocks: Asia

The Phi Rak Nong Elders Love the YoungerProject in Lampang province in Thailandprovides psychological support for peopleaffected by HIV and AIDS. Youth volunteersfrom the Group for Children promote socialacceptance and try to reduce the isolationand worries of affected families throughhome visits. The project also encouragesolder people affected by HIV and AIDS toshare their experience with youngermembers of the family. – Interview with Group for Children

Older carers can be given supportin caring for their grandchildren

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Children who have been in residential care are oftenstigmatised and discriminated against at school and in widersociety. (International Save the Children Alliance. A last resort:the growing concern about children in residential care)


Strengthen and support the capacity of AIDS-affectedhouseholds, surviving parents or extended family members toprovide care for their children.

Support older children to care for younger siblings in theirfamily home.

Arrange informal or formal foster care or local adoption,ensuring in all cases that this is monitored and supported.

Establish community-based small group homes foradolescents or sibling groups.

Enable residential institutions to evolve into outreachprogrammes that provide day care activities and support andotherwise enable vulnerable households to care for their ownchildren.

Encourage communities to establish care centres for affectedand vulnerable children.

Ensure that children who live in institutions receive care thataddresses their psychosocial and emotional needs and haveopportunities to integrate with society. Possible actionsinclude:

- Select well-qualified, trained staff with an understanding ofchildhood development and a commitment to children.

- Encourage the community to involve children frominstitutions in community events and activities

A study in Cambodia found that whileadults thought that orphanages were asuitable solution for AIDS orphans, childrenin these orphanages disagreed, saying theywould prefer to live in foster families orcommunities. – KHANA, 2000. Childrenaffected by HIV/AIDS: appraisal of needsand resources in Cambodia

In Thailand, one strategy used to reduce thenumber of children living in institutions is toplace children with foster families whilepreparations are made for them to return totheir family or for adoption. Foster families arepaid a stipend by government, and a socialworker visits weekly to monitor the child’scare. – Save the Children UK, 2001. Researchon available and potential support systems forchildren infected/affected by HIV/AIDS

Similarly, the Holt Sahathai Foundation inBangkok has a programme where familiesprovide temporary accommodation forchildren whose parents are unable to takecare of them and for children during theprocess leading to permanent adoption. Mostof these children have HIV-positive parents.The programme ensures that children receiveindividual attention and care. The temporaryfoster families, who are carefully selected,receive funds to cover the cost of food andexpenses, information about HIV and childhealth care, family counselling and regularhome visits from Foundation staff. – Memberof the development group for BuildingBlocks: Asia

The Vieng Ping Children’s Home, also inThailand, only places children in the Home asa last resort. Strategies to preventinstitutionalisation include family support,reunifying children with their families,adoption or fostering within the extendedfamily or community, and paying for fosteringby non-relatives. – Member of thedevelopment group for Building Blocks: Asia

Baan Gerda is a village of six houses forchildren with HIV that operates under theChildren’s Rights Foundation in Thailand.Each house has eight to ten children whoare looked after by two carers. The aim isto ensure children have a good quality oflife and as much happiness as theirsituation allows. – The sprout of hope,Lemon Publishing House, September 2003

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Help children to help themselves

Programmes should strengthen the capacity of children todevelop self-reliance and learn how to care for themselves. This means listening to children and involving them in decisions.Encouraging children to participate in making decisions helps

them to learn about cooperation, mutualunderstanding and

social responsibility.Strengtheningchildren’s copingcapacity also meansteaching them life skillsand providing them

with practical as wellas psychosocialand emotionalsupport.


Provide children with information, counselling and skills,including communication and negotiation skills. Possibleactions include:

- Establish child-friendly information centres and developappropriate educational materials.

- Provide referrals to counsellors trained to help children,where available.

- Organise skills training for children in areas they feel areimportant.

- Identify adults in the community to act as mentors.

Promote peer support and counselling. Possible actionsinclude:

- Involve children in planning peer support activities.- Identify older children who can provide support to younger

children, and train them in counselling skills, especiallybereavement counselling.

- Provide opportunities for children to develop strategies todeal with stigma and discrimination.

- Establish support groups for children.

The organisation Friends Mith Samlanhworks with street children inCambodia, and one of itsobjectives is toreintegrate childreninto schools,families andsociety.Friendsprovidescounsellingand support to encouragereconciliation between children and their families. – Member of the development group for Building Blocks: Asia

In India, the 2001Juvenile Justice (Careand Protection ofChildren) Act makesprovision for adoption as a wayof rehabilitating children who are orphaned,abandoned, neglected and abused. Thenew Act removes previous limitations onadoption and makes legal adoption bywider range of persons possible. – Lawyers’ Collective HIV/AIDS Unit,Positive dialogue, Issue 9, May 2001

The Community Child Care Centre NetworkProject in Thailand runs a day care centrefor pre-school children, including thosewhose parents have died or have gone towork elsewhere and are being cared for bygrandparents. Community volunteers takeit in turns to care for the children. – Member of the development group forBuilding Blocks: Asia

In 1997, the Suthasinee Noi-in Foundationfor Children and Youth in YasothornProvince set up a home for children affectedby HIV and AIDS whose families cannot carefor them, and children with drug abuseproblems. There is no differentiationbetween children with and without HIV. Eventhough the home has almost 50 children, itis organised so that the children can live asif they were in a normal family. Each childhas a personal space, older children help tocare for the young ones, and children go toschool in the community. – Member of thedevelopment group for Building Blocks: Asia

Children enjoy beingtold stories

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C A R E A N DP S Y C H O S O C I A LS U P P O R T Principles & strategies

Use creative ways to help children express themselves andtheir feelings. Possible actions include:

- Encouragechildren todraw theirsituationor towritepoems,stories orletters todeceasedparents orabsentsiblings.

- Organise role-play and dramato act outsituations.

- Use puppets or models tohelp children tell their stories.

Provide children with opportunities to get away from theirfamily and caring responsibilities. Possible actions include:

• Establish community nurseries and day care for youngersiblings.

• Organise summer camps.

A 10-year-old girl with HIV in Thailand said: “Iwant other people to understand people withAIDS. I attend the meetings at the hospitalwith my mother. I think that I have moreunderstanding. My friends always ask me.Now, my friends understand more aboutAIDS because I tell them it is not easy tospread HIV. I want to be the one who speaksto others to help them understand AIDS and Iwant everybody in this country to understandAIDS.”AIDSNet newsletter, Vol.4, April–September2003

The Thai Youth AIDS Programme organisessummer camps for affected and infectedchildren. These camps give children thechance to relax and get away from theirresponsibilities, learn new skills, develop newfriendships and build peer support networks,and express themselves in a supportiveenvironment.Member of the development group forBuilding Blocks: Asia

In Thailand, the AIDS Access Foundation,AIDSNet Foundation, MSF-Belgium and WeUnderstand Group collaborated to set up achildren’s art camp for children with HIVaged seven to fourteen years. The childrenhad a chance to learn about art and how tocommunicate using painting and story-telling. They had fun being creative andalso learned to live together and to provideeach other with mutual support. Somepaintings were bought by members of thepublic, which made the children veryproud; others were displayed at theInternational AIDS Conference in Bangkokin 2004. Some of the children were verytalented – one is now receiving support tostudy at an art institution. The stories, withtitles such as “I’m not a burden”, “I’m fine”,“80 days in a paediatric ward”, “Myfavourite doctor”, will be used to help otherchildren.Member of the development group forBuilding Blocks: Asia

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Children enjoy toys and games


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References

AIDSNet newsletter, Vol. 4, April–September 2003.

Economic and Social Commission for Asia and the Pacific, UN and AusAID,HIV/AIDS prevention, care and support: stories from thecommunity.

International Save the Children Alliance.A last resort: the growing concern about children inresidential care.

KHANA, 2000.Children affected by HIV/AIDS: appraisal of needs andresources in Cambodia.

Lawyers’ Collective HIV/AIDS Unit, 2001.Positive dialogue, Issue 9, May.

Lemon Publishing House, 2003.The sprout of hope, September.

Orchid Clinic, Chiang Mai (personal communication).

Save the Children UK, 2001.Research on available and potential support systems forchildren infected/affected by HIV/AIDS.


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Useful resources

Wesumperuma, D., Help Age International, 2002.HIV/AIDS in Northern Thailand: a saga of resilience in a humancalamity AED/USAID. Speak for the child: a program guidewith tools.

Children and AIDS International Network, 1998.Children living in a world with AIDS: guidelines for Children’sparticipation in HIV/AIDS programmes.

Family Health International, 2001.Care for orphans, children affected by HIV/AIDS and othervulnerable children: a strategic framework.

Fox, S., 2001.Investing in our future: psychosocial support for childrenaffected by HIV/AIDS, UNAIDS.

Germann, S., Madorin, K. and Ncube, N., SalvationArmy/Terre des Hommes, 2001.Psychosocial support for children affected by AIDS: practicalresponses from Zimbabwe and Tanzania.

International HIV/AIDS Alliance, 2003. Building blocks: Africa-wide briefing notes. Psychosocial support.

International HIV/AIDS Alliance, 2004. Building blocks in practice: participatory tools to improve the development of care and support for orphans andvulnerable children.

SAT, 2003. Guidelines for counselling children who are infected with HIVor who are affected by HIV and AIDS.

Save the children and NACWOLA, 2004. Breaking the silence: memory books and successionplanning: the experience of NACWOLA and Save the ChildrenUK in Uganda.

Sr Silke-Andrea Mallmann CPS, 2003. Building resilience in children affected by HIV/AIDS, CatholicAIDS Action, Namibia.

Tolfree, David K., 2003.Community-based care for separated children, Save theChildren Sweden.

http://synkronweb.aidsalliance.org/graphics/OVC/documents/0000757e00.pdf



http://www.fhi.org/NR/rdonlyres/e5eudagbhigtrlgq6wuvcltmnaiad55yfe3iwwv35ws4s322pu3gu4ffyyfu3h4ndcf6hm6noizaic/CAACompletebook.pdf



http://www.savethechildren.org.uk/scuk_cache/scuk/cache/cmsattach/1859_Memory_Books.pdf































UNAIDS, 2000. Caring for caregivers: managing stress in those who care forpeople with HIV and AIDS, UNAIDS Best Practice Collection.

UNICEF, 2001.Children in distress: a best practice response to children affectedby HIV/AIDS.

Williamson, J., 2004. A family is for a lifetime. Part I: A discussion of the need forfamily care for children impacted by HIV/AIDS. Part II: Anannotated bibliography.

Useful websites

www.icdp.infoInternational Child Development Programmes

www.repssi.orgRegional Psychosocial Support Initiative (REPSSI)

www.child-to-child.orgThe Child-to-Child website has many useful resources onchildren’s participation in health promotion.


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Useful resources

www.child-to-child.org



www.repssi.org

www.repssi.org














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Notes


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Notes

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