Supporting community action on AIDS in developing countries. Family-centred HIV programming for children

Transcription

1 Supportig commuity actio o AIDS i developig coutries Family-cetred HIV programmig for childre

2 Good practice guide series This guide is oe i a series of good practice guides produced by the Iteratioal HIV/AIDS Alliace (the Alliace). This series brigs together expertise from our global commuity-level HIV programmig to defie ad guide good practice i a rage of techical areas, icludig: Huma rights ad GIPA Research, evaluatio ad documetatio HIV prevetio Sexual ad reproductive health ad rights ad HIV itegratio HIV ad tuberculosis HIV programmig for childre HIV ad drug use Plaig Alliace good practice guides are: user-friedly how to guides targetig HIV programmers workig i commuity settigs i developig ad trasitioal coutries helpig to defie what is good practice for commuity-level HIV programmes. To dowload Alliace publicatios, please visit publicatios. How was this guide developed? This guide to usig a family-cetred approach to HIV programmig for childre has bee produced collaboratively by the Alliace ad Save the Childre UK. It draws o the experiece ad expertise of both orgaisatios. It was developed i cosultatio with the Alliace ad Save the Childre staff ad parters aroud the world, as well as other exteral techical specialists. Save the Childre UK are leaders i the areas of childre s rights, care, protectio ad participatio, with specific orgaisatioal capacity i respodig i emergecy cotexts. Save the Childre UK is a advocate for family stregtheig ad family-based alterative care for vulerable childre. The Alliace has expertise i comprehesive programmig for childre affected by HIV ad AIDS across Asia ad Africa. The orgaisatio has developed a wide rage of tools for implemetig programmes for childre, focusig o commuity actio ad mobilisatio, work with key populatios ad childre i cocetrated epidemics. The Alliace has also produced research o the sexual ad reproductive health eeds of adolescets livig with HIV. Both orgaisatios share a commitmet to upholdig childre s rights ad esurig their protectio. They are also committed to listeig to ad valuig all childre, ad to keepig childre i their commuities ad families wherever possible. First editio published: Jauary 2012 ISBN: Iteratioal HIV/AIDS Alliace 2012 Iformatio cotaied i this publicatio may be freely reproduced, published or otherwise used for o-profit purposes without permissio from the Iteratioal HIV/AIDS Alliace. However, the Iteratioal HIV/AIDS Alliace requests that they are cited as the source of the iformatio. Photos (from the top): Members of the Nyimbwa Multi-Purpose group, Nyimbwa, Ugada. The group works with childre affected ad ifected by HIV ad AIDS. Nell Freema for the Alliace. The Mother Theresa childre s support group, set up as part of the CHAHA project, Idia. The Alliace. Outreach worker for sex workers associatio 21 de Septiembre ad her so at a brothel i Esmeraldas, Ecuador. Marcela Nievas for the Alliace.

3 Alliace good practice HIV programmig stadards family-cetred HIV programmig for childre Each guide i the Alliace good practice series is accompaied by a set of programmig stadards. Implemetig these is oe of the ways that the Alliace, our parters ad other orgaisatios ca defie ad promote a uified ad quality-drive approach to HIV programmig. This good practice guide cotais iformatio, strategies ad resources to help programme officers meet the good practice stadards of our family-cetred HIV programmig for childre. There are seve Alliace stadards that guide HIV programmig for childre. This guide focuses o Stadards 6 ad 7 that directly relate to implemetig family-cetred HIV programmig. The other five stadards are detailed i Appedix 1. alliace good practice hiv programmig stadards for familycetred hiv programmig for childre Good practice stadard 6 Our orgaisatio promotes a family-cetred approach, reachig childre withi ad through their families ad commuities. Good practice stadard 7 Our orgaisatio promotes ad/or provides itegrated family-cetred services i health, educatio ad social welfare i order to address the eeds ad rights of childre. key resource The full Alliace good practice HIV programmig stadards for a rage of techical areas ca be foud at: Frech versio Spaish versio 1 family-cetred hiv programmig for childre

4 Ackowledgemets Authors: Ros Ket, Kate Iorpeda ad Alice Fay Project coordiators: Kate Iorpeda ad Alice Fay Copy editor: Kathry Perry Fial review team: Bill Bell (Save the Childre UK), Lida Richter (HSRC/Global Fud), Christie Steglig (Alliace). Reviewers: Hek va Beers (Save the Childre, Cambodia), Aet Biryetega, Kedra Blackett-Dibiga (Save the Childre US), Emily Delap (Everychild), Kate Harriso (Comic Relief), Ia Hodgso (idepedet cosultat), B. Keerthi (VMM, Idia), Pat Lim Ah Ke (UNICEF, US), Roie Lovich (Save the Childre US), Maxwell Madzikaga (IFRC), Sita Michael Borma (Save the Childre, Demark), Rita Muyambo (Alliace South Africa), Haah Newth (Save the Childre, Côte d Ivoire), Carolie Eye (Save the Childre, Nigeria), Nia O Farrell (Christia Aid), Hak Phirath (KHANA, Cambodia), Rebecca Siclair (VSO), Chea Thira (KHANA, Cambodia), Adrew Tomkis (Istitute of Child Health), Maria Zuurmod (LSHTM). Cotributios: Rachel Alboe (Help Age Iteratioal), Olivia Dix ( The Pricess Diaa Memorial Fud), Choolwe Haamujompa (Alliace Zambia), Ae Nola, Nthabiseg Nkwe (BONELA, Botswaa), Lesley Holst (Save the Childre Mozambique). Thaks to the Alliace Best Practice Uit, the publishig ad commuicatios team, ad the field programmes teams. abbreviatios ad acroyms AIDS ART ARV CABA CBO HIV MARYP NGO OVC PEPFAR PPTCT TB UNAIDS UNICEF VCT WHO acquired immue deficiecy sydrome atiretroviral therapy atiretroviral childre affected by HIV ad AIDS commuity-based orgaisatio huma immuodeficiecy virus most-at-risk youg people o-govermetal orgaisatio orphas ad other vulerable childre Presidet s Emergecy Pla for AIDS Relief (USA) Prevetio of paret to child trasmissio tuberculosis Joit Uited Natios Programme o HIV/AIDS The Uited Natios Childre s Fud volutary cousellig ad testig World Health Orgaizatio 2 family-cetred hiv programmig for childre

5 Cotets Itroductio 4 What is this guide for? 4 Who is this guide for? 5 Makig it work i practice 5 Laguage matters 5 1. What is a family-cetred approach? 6 Defiitio of a family-cetred approach 7 Why should we apply a family-cetred approach to our work with childre affected by HIV? 8 What is the evidece that a family-cetred approach ca work i practice? 11 Critiques of a family-cetred approach What do we eed to kow about families? 14 Defiitios of family 15 Commo shapes of families 17 What characteristics of families are relevat to desigig programmes? 18 Cotexts i which families live 19 Who are the people ad what are the places that support families? How do we desig a family-cetred programme? 22 Priciples i plaig ad desig Family-cetred programmes i practice 26 Health 27 Ecoomic stregtheig 38 Food ad utritio 41 Educatio ad early childhood developmet 43 Care ad protectio 46 Emotioal ad psychological support How do we make a family-cetred approach work i our orgaisatios? 50 How do we adapt our programmes to a family-cetred approach? 6. How do we add quality to our programmes? 53 What are the cross-cuttig priciples of family-cetred care? 54 How do we target services ad make sure they reach those who eed them? Summary 58 Appedix 1: Stadards 61 Appedix 2: Glossary 69 Appedix 3: Stages of developmet 71 3 family-cetred hiv programmig for childre

6 Itroductio This guide is oe of a series of good practice guides, ad cotais iformatio, strategies ad resources to help HIV programmers implemet family-cetred HIV programmig for childre. The importace of family i the lives ad developmet of childre has log bee recogised, as well as the eed to stregthe a family s ability to care for their childre. However, the HIV respose has so far assembled oly limited evidece ad guidace for family-cetred programmig for childre. Historically, programmes workig to meet the eeds of childre affected by HIV have targeted idividual childre to provide direct support, sometimes bypassig their family. Paediatric treatmet ad services for childre have bee delivered separately to those for adults. Care ad support for ill people at home has ot addressed the eeds of childre, may of whom are ivolved i caregivig. Recet evidece 1 suggests that outcomes for childre affected by HIV could be improved by workig with families as well as idividual childre. Our focus eeds to shift towards supportig families to care for childre, providig services that cosider the eeds of the whole family rather tha oly idividuals withi it. This family-cetred approach builds o relatioships withi the family to maximise the services delivered to childre. Workig with families i this way is the basis of a family-cetred approach. What is this guide for? This guide aims to: icrease uderstadig of the beefits of a family-cetred approach to providig care ad services for childre affected by HIV show how a family-cetred approach ca complemet ad improve the impact of services such as health, educatio ad social welfare provided directly to childre assist programmers to apply a family-cetred approach i programmes providig services to childre affected by HIV support advocacy for family-cetred approaches to programmes that provide care, support ad treatmet for childre affected by HIV. key to icos used i this guide Key resource Case study Good practice stadard Explaatio of key terms Supportig our families is the way to achieve the best outcomes for our childre. The guide will do this by: describig what is meat by a family-cetred approach (Chapter 1) presetig a summary of the research idicatig that a family-cetred approach ca achieve better outcomes for childre (Chapter 1) describig differet types of families, their characteristics ad cotexts (Chapter 2) settig out practical steps to implemet family-cetred approaches i our programmes workig with childre affected by HIV (Chapter 4) sharig case studies from aroud the world of programmes already usig a family-cetred approach (Chapter 4) examiig some practical cosideratios for our orgaisatios to help us prepare for family-cetred workig (Chapter 5) 1. Joit Learig Iitiative o Childre ad HIV/AIDS: 4 family-cetred hiv programmig for childre: itroductio

7 outliig cross-cuttig priciples that should be applied to esure good practice whe we pla ad implemet family-cetred programmes (Chapter 6) describig how a family-cetred approach ca be more widely applied to programmes that are ot primarily targetig childre i order to esure that they are icluded (Chapter 6). Who is this guide for? The guide is for people ad orgaisatios that are developig ad implemetig programmes for childre affected by HIV i resource-limited settigs. Familycetred programmig has may beefits outside of the cotext of HIV. The guide will also be useful to ayoe ivolved i developig ad deliverig services for childre more geerally. Makig it work i practice This guide is desiged as a resource to help our orgaisatios implemet a family-cetred approach to carig for ad protectig childre, ad providig the services they eed. It aims to be useful across a broad rage of cotexts ad cultures, ad case studies from a umber of coutries have bee icluded. We eed to apply the priciples offered here to our ow cotexts ad adapt the approaches take i may of the case studies. We do ot expect ay orgaisatio to provide the full rage of itervetios described. Rather, orgaisatios ca apply the iformatio ad priciples relevat to their ow programmes. However, whe we, as programmers, also uderstad the broad rage of itervetios that ca support families ad childre usig a familycetred approach, we ca make better referrals to ad create likages with other services. how old is a child? I may coutries there are differet defiitios ad age rages that ca make it challegig for programmers. I this guide childre are defied as 0 17 years. It is recogised that childre go through a process of developmet betwee birth ad the age of 18, ad have varyig eeds at each key stage of developmet. These key stages of developmet are summarised i Appedix 3. The guide is desiged as a user-friedly ad accessible resource. We provide refereces ad resources for readers who wish to lear more about particular topic areas or itervetios, ad sigposts to related or more i-depth tools ad resources. Laguage matters Childre affected by HIV The term childre affected by HIV is used widely throughout this guide. It icludes the followig groups: childre directly affected by HIV this meas childre livig with HIV ad childre livig with a family member who has HIV childre vulerable to the impacts of HIV ad AIDS for example, childre who have bee orphaed, childre livig outside of paretal care, or childre i poor families childre especially vulerable to exposure to HIV because of their circumstaces for example, childre ijectig drugs ad abused childre who are sexually exploited childre who are exposed to HIV through materal ifectio. We avoid the use of abbreviatios ad acroyms commoly used to describe childre affected by HIV ad AIDS such as OVC, CABA, MARYP or descriptios that are iaccurate ad ofte stigmatisig such as AIDS orphas. This guide is desiged to support childre ad their families who are affected by HIV i differet ways. The startig poit is our belief that childre have the right to be treated with digity ad respect ad that childre ca be a active part of the solutio. key resource Sherr, L. et al. (2008), A systematic review o the meaig of the cocept AIDS orpha : cofusio over defiitios ad implicatios for care, AIDS Care 20(5): family-cetred hiv programmig for childre: itroductio

8 1 What is a family-cetred approach? I this chapter: Defiitio of a family-cetred approach Why should we apply a family-cetred approach to our work with childre affected by HIV? What is the evidece that a family-cetred approach ca work i practice? Critiques of a family-cetred approach 6 family-cetred hiv programmig for childre

9 Defiitio of a family-cetred approach Historically, programmes workig to meet the eeds of childre affected by HIV have targeted idividual childre to provide direct support, ofte bypassig the family. Paediatric treatmet ad services have bee delivered separately to those for adults. A family-cetred approach ackowledges that a child s quality of life is iterwove with the life ad experiece of the family i which they live. Supportig them idividually may ot be eough to esure the best possible quality of life for a child affected by HIV. A family-cetred approach suggests that without addressig problems that affect the child at home, such as extreme poverty or sickess of family members, the best quality of life for that child will ot be achieved. what is a family-cetred approach? A defiitio of the family-cetred approach that is widely used i the area of HIV is: A comprehesive coordiated care approach that addresses the eeds of both adults ad childre i a family ad attempts to meet their health ad social care eeds, either directly or idirectly, through strategic parterships ad/or likages ad referrals with other service providers. 2 The above defiitio highlights two priciples that are importat i family-cetred programmig ad policy developmet: 1. Social care ad health eeds are both addressed, icludig developmetal, cogitive ad emotioal eeds. A family-cetred approach helps families to care for childre withi the family. It provides services i a way that is family friedly ad recogises the relatioships betwee family members. 2. The holistic eeds of the family are met by a umber of differet groups, so referral ad coordiatio betwee groups ad agecies is eeded. From this defiitio we ca see that i family-cetred programmes we eed to kow where the family of the child is ad who the family members are direct relatives, exteded family, or carers i differet settigs. We eed to kow how the situatio of the family affects the child, their wellbeig ad their opportuities for developmet. The family-cetred approach recogises that supportig the family is oe of the most effective meas of esurig the best possible quality of life for the child. Supportig ad stregtheig families so that childre ca be cared for i a family settig, where possible, rather tha i istitutios such as orphaages, is key to a family-cetred approach. Family-cetred services As well as stregtheig ad supportig families, a family-cetred approach looks at how services such as health or educatio ca be provided i a way that is supportive ad useful to families. Historically, fudig for services for people livig with HIV has bee provided separately for adults ad childre. I some cases this has fragmeted how services have bee provided, so they are ot offered i a way that is most effective for families. 2. Wakhweya, A. et al. (2008), Childre thrive i families: family cetred models of care ad support for orphas ad other vulerable childre affected by HIV ad AIDS, JLICA. 7 family-cetred hiv programmig for childre: what is a family-cetred approach?

10 Family-cetred services ca act as a etry poit to support for all family members. To achieve this, those at the poit of service delivery should be able to assess the eeds of childre ad families, ad lik them to appropriate supports ad services. As we ca see, the family-cetred approach goes beyod providig programmes that are targeted oly at childre to cosider the wider family ad its role i supportig ad carig for childre. It also cosiders the impact that difficulties withi the family have o childre. This does ot mea that we work oly with families as the uit of support ad o loger work with childre as idividuals. We eed to assess all the factors that are affectig a child ad provide the most appropriate programme. By focusig policy ad service provisio predomiatly o the idividual child, we miss the opportuity to draw o ad stregthe the structure that is most effective i respodig to childre s eeds: the family. 3 I practice this may mea complemetary programme compoets at differet levels that target: childre as idividuals for example, idividual cousellig, supplemetary utritio families or households as a uit for example, access to child grats adults withi a family to eable them to care for childre or reduce the carig resposibilities of childre for example, support ad compaioship, savigs ad loas schemes, atiretroviral therapy. Why should we apply a family-cetred approach to our work with childre affected by HIV? There a umber of reasos why a family-cetred approach makes sese whe we are plaig ad deliverig programmes ad policy iitiatives for childre affected by HIV. May of these reasos will be familiar to us already. Some of the key oes are outlied below. Families are the primary uit of care for childre Most childre are cared for by their families. A estimated 95% of childre who have lost oe or both of their parets to AIDS live with a survivig paret or exteded family members. 4 I most cotexts, adult family members are the mai providers of love, protectio, care ad socialisatio for childre. They have a strog ifluece o their childre s survival, health ad educatioal achievemet. Programmes ad services valuable as they are ted to be trasiet, while families are lifelog iflueces o childre. Therefore supportig families ad developig their ability to care for their childre will mea that the childre themselves will beefit, both i the short ad loger term. I have to be a mother ad father to my sister ad brother, ad I still wat to fiish my educatio. It s a heavy burde to carry. I wish my aut ad ucle could help but they do t liste to me. Withi some families i areas of high HIV prevalece childre are o loger cared for by adults. Istead, they are the primary carers i the family, takig care of sick ad elderly family members or youger childre. Child ad youg adult carers bear a huge burde of resposibility for earig a icome ad providig physical care for others. Cosequetly, they are ofte deprived of opportuities for school, play ad emotioal support from adults. Providig support to all the family, icludig sick ad vulerable adults, ca remove some of the child s resposibilities ad may eable them to retur to school. Itervetios that provide direct support to vulerable childre are usually time limited. But stregtheig the ecoomic security ad carig capacities of the family will have a impact beyod the life of the programme. Maitaiig the 3. JLICA (2009), Home truths: facig the facts o childre, AIDS, ad poverty. Fial report of the Joit Learig Iitiative o Childre ad HIV/AIDS. 4. Hosegood, V. et al. (2008), Demographic evidece of family ad household chages i respose to the effects of HIV/AIDS i Souther Africa: implicatios for efforts to stregthe families, JLICA. 8 family-cetred hiv programmig for childre: what is a family-cetred approach?

11 health of all family members, particularly adults, through early treatmet ad improved health care meas that childre are less likely to be orphaed ad families ca stay together. There is evidece that the health, wellbeig ad survival of a mother are critically importat, particularly for childre uder the age of six. Research from East Africa shows that materal survival ad HIV status are strog predictors of child survival. The research demostrates that higher materal mortality i HIV-positive wome compouds the risks of mortality for childre, regardless of their HIV status. 5 Further research shows that the health of female carers, particularly mothers ad gradmothers, has a sigificat impact o household welfare, icludig the utritioal status of childre. The deaths of adult wome decrease opportuities for childre to atted school, while icreasig utritioal isecurity ad household poverty. 6 Families provide the best outcome for childre There is also evidece that fuctioal families provide the best outcomes for childre. A fuctioal family is oe that is able to provide for the material ad social eeds of the child. It is motivated to care for, urture ad protect the child. Eablig families to fuctio as well as possible i carig for their childre will offer the best outcomes for childre themselves. This may be achieved by providig ecoomic support, developig the skills of family members, or givig family members compaioship ad support to meet the eeds of their childre. I may cotexts the HIV epidemic has resulted i large umbers of childre beig take ito istitutioal care eve whe they have survivig relatives. It is clear from the evidece that istitutioal care i most cases caot offer childre the same level of cosistet love, support ad care for their social, physical ad cogitive developmet as they would get i a family settig. Moreover, the cost of istitutioal care for childre ca be up to te times more tha family care. 7 There eeds to be a reallocatio of curret ivestmets i orphaages ito families ad commuities so that childre ca be better cared for withi a family settig. key resources Csáky, C. (2009), Keepig childre out of harmful istitutios: why we should be ivestig i family-based care, Save the Childre. Doyle, J. (2010), Misguided kidess: makig the right decisio for childre i emergecies, Save the Childre. SOS Childre s Villages Iteratioal ad ISS (2009), Guidelies for the alterative care of childre. Available at: et/s/library.php?ld=988 Tolfree, D. (2005), Facig the crisis: supportig childre through positive care optios, Save the Childre. Tolfree, D. (2006), A sese of belogig: case studies i positive care optios for childre, Save the Childre. Williamso, J. ad Greeberg, A. (2010), Families ot orphaages, Better Care Network. Whe there is eed for residetial care, it should be offered oly i the short term whe there is o family-based alterative such as kiship or foster care. It should always be part of a process of re-uitig childre with their families or strivig to establish them i permaet family settigs. Save the Childre believe that childre should be cared for i family settigs uless this is impossible or usafe. Care i istitutios should oly be used as a last resort. The orgaisatio has a detailed set of resources i the First Resort series ( that provides guidace ad case studies to help pla programmes to support families to care for childre. 5. Zaba, B. et al. (2005), HIV ad mortality of mothers ad childre: evidece from cohort studies i Ugada, Tazaia ad Malawi, Epidemiology 16(3): Nakiyigi, J.S. et al. (2003), Child survival i relatio to mother s HIV ifectio ad survival: evidece from a Ugada cohort study, AIDS 17(12): Shema, N. et al. (2009), HIV-free survival at 9-24 moths amog childre bor to HIV ifected mothers i the Natioal Program for the prevetio of mother-to-child trasmissio of HIV i Rwada: a household survey, Epidemiology 16(3): Sherr, L. (2008), Stregtheig families through HIV/AIDS prevetio, treatmet, care ad support, JLICA. 6. Zoll, M. (2008), Itegrated health care delivery systems for families ad childre impacted by HIV/AIDS: four program case studies from Keya ad Rwada, JLICA. 7. Desmod C. et al. (2002), Approaches to carig: essetial elemets for a quality service ad cost effectiveess i South Africa, Evaluatio ad Program Plaig 25(4): family-cetred hiv programmig for childre: what is a family-cetred approach?

12 The Uited Natios (UN) Guidelies for the Alterative Care of Childre 8 produced i 2009 also edorse the cocept that childre should be cared for withi families wheever possible. However, while keepig childre withi a family is usually preferable, ot every family is fuctioal, ad abuse ad eglect withi families does occur. Alterative care should be available whe childre are at risk, but i a family-like settig wherever possible. May childre are placed i alterative care i respose to extreme poverty ad ecoomic stress rather tha abusive or dysfuctioal families. Providig support to families ca help break this patter. As well as prevetig childre beig placed i alterative care, it ca also allow childre who are already i care to retur to their families. HIV withi families HIV ca be trasmitted withi families: sexually betwee adult parters; through trasmissio from mother to child; ad through sexual abuse betwee adults ad childre. If oe member of a family is HIV positive it is likely that other members of the family have bee exposed, either sexually or through paret-to-child trasmissio. This is why it makes sese whe a idividual is diagosed with HIV to assess the risk of all the family ad offer cousellig, testig, treatmet for HIV ad prevetive services as eeded. This ca result i family members who are HIV positive receivig moitorig ad early treatmet. New ifectios ca be preveted or reduced betwee discordat parters by providig volutary cousellig ad testig, safer sex cousellig, codoms ad treatmet. Prevetio of paret-to-child trasmissio services (PPTCT) ca also help prevet or reduce ifectios from mothers to subsequet childre. Referral of family members for early diagosis ad iitiatio of treatmet ca help prevet ifectio withi families. I ever wated to tell people that HIV was affectig my family. I wish I had kow where to get help before thigs got so bad. A similar approach is used i tuberculosis (TB) services, 9 where cotactig all of a idividual s family members is a priority. However, curretly most HIV services i developig coutries provide testig ad treatmet to idividuals i separate adult ad paediatric cliics. A family-cetred approach promotes assessig, testig ad treatig families as a uit, while ackowledgig that services must carefully cosider the ethics of cofidetiality, coset ad disclosure (see Chapter 4). Family relatioships affect the health choices of idividuals Family relatioships ad power dyamics withi families ca affect the uptake of iformatio, advice or services of idividual members. Wome livig with HIV may ot feel able to act o health advice about exclusive breastfeedig ad appropriate ifat feedig if it is cotrary to local orms or cultural practices. Family pressure ad stigma from parters, i-laws ad mothers to do thigs differetly ca stop wome from actig upo the advice they have received. Health is iflueced by a set of social relatioships, cultural orms ad practices. Usig a family-cetred approach ca help us to assess the impact of family relatioships ad iflueces. We ca the address them sesitively, fidig iformatio, advice ad approaches that work withi the family settig. Impacts of HIV are experieced withi families Whe a perso is diagosed with HIV the impacts go beyod the idividual themselves ad affect other family members. The cost of treatmet, travellig to medical appoitmets ad the loss of icome whe they are uable to work 8. UN (2009), Guidelies for the alterative care of childre 64/142. Resolutio adopted by the Geeral Assembly, 24 February Iteratioal HIV/AIDS Alliace, Good Practice Guide: TB/HIV itegratio (forthcomig). 10 family-cetred hiv programmig for childre: what is a family-cetred approach?

13 reduces the moey available withi the family for essetials like food ad school fees. Illess or death of the adult breadwier may mea childre eed to leave school i order to work. Youg girls may have to egage i sex work, or families may split whe members migrate to fid work ad others stay behid. Icreased expeses ad reduced icome are likely to result i iadequate food, leadig to malutritio. The vulerability of the whole family may be icreased ad their copig mechaisms eroded. O a social level, stigma ad discrimiatio ca exted to the whole family i areas where people with HIV are still stigmatised. This will affect social relatios, work ad educatioal opportuities, causig emotioal distress ad isolatio. A family-cetred approach recogises how HIV affects the whole family, ad develops policies ad programmes that icrease the resources ad resiliece of the family as a whole. What is the evidece that a family-cetred approach ca work i practice? I 2004 ad 2008 two global iitiatives were set up to idetify strategies that would lead to the greatest improvemet to the quality of life for childre affected by HIV. These were: The Framework for the Protectio, Care ad Support of Orphas ad Vulerable Childre Livig i a World with HIV ad AIDS (a iteragecy cosesus documet produced by UNICEF) 10 The Joit Learig Iitiative o Childre ad HIV/AIDS (JLICA) 11 key resource DeGearo, V. ad Zeitz, P. (2009), Embracig a familycetred respose to the HIV/ AIDS epidemic for the elimiatio of pediatric AIDS, Global Public Health 4(4): Experts, researchers, implemeters, activists, policymakers ad people livig with HIV from differet parts of the world collaborated over a umber of years to come up with a set of recommedatios. Followig a extesive aalysis of research ad evidece, ad drawig o their professioal ad persoal experiece, both groups strogly recommeded workig with families i order to provide the greatest beefits for childre affected by HIV. Both groups have sice produced a rage of additioal documets ad resources. A compaio documet to the 2004 framework was lauched i a summary of the recommedatios of global iitiatives to idetify strategies to improve the lives of childre affected by hiv Support childre through families. Stregthe the capacity of families to protect ad care for orphas ad vulerable childre by prologig the lives of parets ad providig ecoomic, psychosocial ad other support, especially access to social protectio such as cash trasfers. Mobilise ad stregthe commuities to support families. Esure access for orphas ad vulerable childre to essetial ad itegrated services, icludig educatio, health care ad birth registratio. Esure that govermets protect the most vulerable childre through policy ad legislatio, ad chaellig resources to families ad commuities. Raise awareess at all levels through advocacy ad social mobilisatio to create a supportive eviromet for childre ad families affected by HIV. 10. UNICEF (2004), The framework for protectio, care ad support for orphas ad vulerable childre livig i a world with HIV ad AIDS. 11. JLICA (2009), Home truths: facig the facts o childre, AIDS, ad poverty. Fial report of the Joit Learig Iitiative o Childre ad HIV/AIDS. 11 family-cetred hiv programmig for childre: what is a family-cetred approach?

14 Buildig o the priciples ad approaches of the 2004 framework, this brigs i ew evidece ad experiece of: child vulerability i the cotext of HIV the importace of child-sesitive social protectio the importace of protectig the most margialised childre data o programmes for childre how resources are reachig childre ad families. The ew guidace also recogises the advaces i iteratioal thikig aroud alterative care for childre preseted i the Guidelies for the Alterative Care of Childre, 13 ad recet developmets i child-sesitive social protectio. It offers atioal-level guidace, ad this good practice guide will complemet it by applyig the framework at the programme level. Both UNICEF ad JLICA recommed supportig childre i ad through families. They emphasise the importace of childre havig access to essetial services. Both groups also prioritise targetig itervetios at family, commuity service ad policy levels. This is to esure joied-up workig, ad sustaiable services ad support for childre ad families affected by HIV (see Chapter 2). Evidece of the effectiveess of family-cetred itervetios Research that directly compares programmes usig family-cetred approaches to those that focus o idividual childre would be difficult to coduct. However, there is evidece demostratig the effectiveess of family-cetred approaches i specific family-cetred itervetios for HIV. For example, family-cetred PPTCT programmes have show a icreased uptake of services. 14 There is also a growig evidece base to support the effectiveess of social protectio measures such as cash trasfers i improvig outcomes for childre. 15 Further evidece for specific itervetios is icluded i Chapter 4. I order to validate ad cotribute to this emergig evidece base, it is importat that we use it i cojuctio with iteratioal guidace ad our ow experiece to develop mechaisms to evaluate our family-cetred programmes. Critiques of a family-cetred approach Lookig at curret critiques of a family-cetered approach allows us to effectively evaluate our ow cotexts ad how this approach will be most successful. A umber of criticisms have bee raised. Families do ot always prioritise the eeds of childre The success of family-cetered approaches depeds o families actig as fuctioal uits ad adults prioritisig the wellbeig of their childre. It assumes that if resources are targeted towards families, adults will use these resources effectively to beefit their childre. But we kow this is ot always the case. I may cultures me have the fial say o how resources are used. They may prioritise activities outside of the family over providig food, payig for treatmet or school fees for childre. There may also be issues aroud the allocatio of household resources related to the geder or age of childre, ad whether they are biological or exteded family members. 12. UNICEF (2011), Takig evidece to impact: makig a differece for vulerable childre livig i a world with HIV ad AIDS. 13. UN/ISS/SOS (2010), Guidelies for the alterative care of childre: a Uited Natios framework. 14. Aluisio, A. et al. (2009), Male parter HIV-1 testig ad ateatal cliical attedace associated with reduced ifat HIV-1 acquisitio ad mortality. 5th IAS Coferece o HIV Treatmet, Pathogeesis ad Prevetio, Cape Tow, abstract TUC105. Available at: Adato, M. ad Bassett, L. (2009), Social protectio to support vulerable childre ad families: the potetial of cash trasfers to protect educatio, health ad utritio, AIDS Care 21(1): family-cetred hiv programmig for childre: what is a family-cetred approach?

15 Families are ot always fuctioal ad supportive of oe aother s eeds Family-cetred testig ad treatmet approaches may work well i fuctioal families but ca have egative cosequeces i families where there are abusive power relatios that are ot addressed or where paretig is compromised. I some cotexts, disclosure of HIV withi the family ca result i violece or idividuals beig throw out of the family group. Uderstadig family dyamics is importat to assessig the effectiveess ad safety of providig family-cetred services. Ethical issues Ethical issues aroud the specific itervetio of families ad couples testig ad attedig health services have also bee raised. Uless appropriate care is take, couples ad families attedig services together may lead to compromised patiet cofidetiality ad deial of idividual rights. It is also crucial that family testig cosiders the life log commitmet that is required by family members withi treatmet iitiatio ad that childre are aware of their optios ad have adequate follow up support. Cost implicatios There ca be cocers that a family-cetred approach will be more expesive to implemet i certai types of programme, limitig the ability to take such programmes to scale. For example, the eed for multi-discipliary teams to provide family-cetred case maagemet may require additioal traiig for health ad social work staff, ad could result i icreased costs. However, havig a umber of services located i oe place may have cost beefits, such as reduced ifrastructure costs, ad reduced trasport ad time costs for families. Costs may be higher i the short term as family-cetred services are established, but lead to efficiecies i the log ru. There has bee little work doe to aalyse the cost of differet types of family-cetred programmes. This eeds to be researched ad documeted systematically, with evaluatio of the beefits i terms of health outcomes for childre ad families i relatio to costs. However, some exploratory work has bee carried out usig a methodology called social retur o ivestmet (see case study below). what is social retur o ivestmet? Social retur o ivestmet is a way of measurig the value created by a programme, or series of iitiatives. It is of particular relevace to programmes where there is o way of allocatig a moetary value to outputs. It is a commuityled approach, where progamme beeficiaries defie the fiacial value to represet the impact of social, health ad ecoomic outcomes. case study: measurig the social retur o ivestmet i idia Alliace Idia has bee adaptig ad pilotig a method to measure the social retur o ivestmet (SROI). A study i Maharastra ad Adhra Pradesh, Idia, i 2010 calculated a SROI of US$6.97 for every US$1 ivested i the CHAHA programme for childre affected by HIV ad their families. Childre aged over 10, ad their parets ad carers, were asked to assig values to the outcomes from utritioal ad educatioal support, support i household emergecies, icome-geeratig projects, ad support to access atiretroviral therapy. As a result, CHAHA has bee able to idetify which activities geerate the most value for beeficiaries. These iclude work o icreasig household icome through icomegeeratig projects, ad likages to utritioal support, ratio cards ad uder-five feedig cetres. These activities have lesseed ecoomic strai o households by reducig hospital visits ad trasport costs, ad have improved educatioal attaimet. The study foud less value i the more welfare-based assistace, such as household emergecy grats. This methodology is still beig tested, ad there is more work eeded to develop other tools to measure the value of differet iputs for families ad their outcomes for childre. However, SROI could be useful as a tool to begi to focus o programme activities that have most outcome value i order to compare itervetios ad maximise outcomes for beeficiaries. CHAHA is fuded by the Global Fud to Fight AIDS, Tuberculosis ad Malaria ad is implemeted by Alliace Idia ad its parters. 13 family-cetred hiv programmig for childre: what is a family-cetred approach?

16 2 What do we eed to kow about families? I this chapter: Defiitios of family Commo shapes of families What characteristics of families are relevat to desigig programmes? Cotexts i which families live Who are the people ad what are the places that support families? 14 family-cetred hiv programmig for childre

17 I order to work effectively with families we eed to uderstad what we mea by family. We eed to uderstad how families fuctio, what iflueces them, ad the places ad people from which they receive support. Defiitios of family The word family has differet meaigs to differet people aroud the world. There is o clear defiitio of family that is uiversally accepted. Diverse family structures exist i various parts of the world, with the ature of relatioships ad the power dyamics betwee me ad wome ad adults ad childre varyig across coutries ad cultures. New variats o traditioal family structures have emerged i respose to coflict, crisis ad social chage. Specifically, HIV has caused ew forms of family to appear as a result of multiple deaths withi traditioal family uits. As a result, ew broader defiitios of family have emerged. what is a family? This guide uses the followig defiitio of family, which refers to the structure of the family ad the roles ad relatioships of its members: Families are social groups coected by kiship, marriage, adoptio or choice. Family members have clearly defied relatioships, log-term commitmets, mutual obligatios ad resposibilities, ad a shared sese of togetheress. Families are the primary providers of protectio, support ad socialisatio for childre ad youth. 16 Whe I atted the drop-i cetre I get offered testig ad codoms. But o oe asks me about other issues: how to pay school fees, how to deal with my child s health problems. I take my so there but there is othig for him. I wat him to have somewhere to play while I go for my tests. From this defiitio we ca see that there are may differet types of families. While the structure of families may vary, their fuctios with respect to urturig, rearig ad protectig childre remais costat. Throughout this guide, where we use the word family we ackowledge the differet compositios of families, from birth families to exteded families. This is illustrated by the followig examples of real family groups. We have used these examples to create characters who will speak throughout the guide. These characters help us to see that families ca take may forms. Whe thikig about families it is importat to remember people i key populatios, such as me who have sex with me, people who iject drugs, sex workers, migrats ad refugees. These groups are ofte targeted through separate programmes. They are assumed to be isolated from family life, ad are rarely asked about their parters or childre. But people i these groups ofte deped o their biological families ad, like others, form ew families made up of ki ad frieds. A family-cetred approach ca be applied i programmes targetig key populatios to assess the eeds of each idividual s childre. It ca the icorporate supports ad services to meet their eeds ito the programme desig. 16. JLICA (2009), Home truths: facig the facts o childre, AIDS, ad poverty: fial report of the Joit Learig Iitiative o Childre ad HIV/AIDS. 15 family-cetred hiv programmig for childre: what do we eed to kow about families?

18 My ame is ShilpaI. I am a 65-yearold gradmother from South Idia. I have bee sole carer for my two gradchildre, Amar (11) ad Smita (9), sice their parets died seve years ago. Both childre are HIV positive ad are receivig treatmet. My ame is Iocet. I am 17 years old, I look after my sister who is 12 ad my brothers who are 9 ad 7 sice my parets died. I try to go to school most days, but sometimes I have to work to fid moey for food. My ame is Marie-Agela. I make a livig as a sex worker. I have a so but he mostly lives with my mother outside Bueos Aires. I would like him to stay with me but I have o oe to look after him at ight whe I am workig. I visit him as ofte as I ca. My ame is Grace. I work for a iteratioal o-govermetal orgaisatio i Lusaka, Zambia. I have two childre, Comfort ad David, ad I also care for my sister s four childre ad two of my brother s childre. My sister ad brother have both passed away. My ame is Ferdiado. I live i Beira i Mozambique. I am HIV positive. I lost my wife last year ad ow I look after my two daughters. I lost my job whe I was sick ad ow I ca t afford to sed my kids to school. My yougest daughter is also livig with HIV. My ame is Alexi. I live i Kiev i Ukraie. I left home whe I was 12. I have lived o the streets for three years. Twelve of us live together ad look after each other. 16 family-cetred hiv programmig for childre: what do we eed to kow about families?

19 Commo shapes of families There are a umber of shapes of families commoly foud i the cotext of HIV. We will look here at some of those we work with i our programmes. Child-headed households Some families have o survivig adult ad are headed by childre. A sythesis of reviews 17 of atioal household-level surveys ad Demographic Surveillace Systems data i Sub-Sahara Africa demostrated that less tha 1% of childre live i child-headed households. Childre may head households for temporary periods related to the migratio or death of a adult, or durig the time before orphaed childre are take ito exteded families or commuity care. Ofte these child-headed households receive support from exteded family or commuity members. However, may youg people are still required to make decisios aloe about the care of their sibligs. They deal with the daily burde of fidig food ad materials for the family. Ad while beig resposible for youger childre, they may also be dealig with their ow trauma ad stress of bereavemet. These childre ofte miss school because of their carig roles, ad ca feel stigmatised ad isolated. Their experieces vary due to age, geder ad the amout of exteral support they receive, 18 ad we must cosider these differet iflueces ad stages of trasitio i our resposes. Households headed by gradparets or vulerable adults May childre live i households with older carers such as gradparets or youg adults. Studies i South Africa ad Ugada foud that approximately 40% of orphaed childre are livig with their gradparets, ad i Zimbabwe more tha half. 19 I may coutries HIV has led to a lost middle geeratio of adults, leavig gradparets ad gradchildre together as a family uit to provide care ad support for oe aother. Older adults are ofte amog the poorest i commuities, ad have fewer opportuities to ear a icome for the household. Cosequetly, childre i families headed by older adults ofte have to udertake carig ad earig resposibilities. This meas they are frequetly withdraw from school, 20 ad miss out o playig ad iteractig with other childre of the same age. Providig care has a major impact o gradparets lives. As people age, their ability to ear a icome reduces. They may also be tryig to cope with decliig health related to ageig. Lookig after childre is both physically ad emotioally demadig, especially whe the gradparets are already grievig for the loss of their ow childre. Carig for gradchildre also brigs additioal costs: school fees ad uiforms, ad providig food, shelter ad health care. Gradparets may have to sell assets like lad i order to get by. Of course, the role may also brig great rewards. key resources Clacherty, G. (2009), Participatory child-led research with childre who are carers i Kafacha Tow, Kadua State, Nigeria: a case study, Save the Childre. Save the Childre (2010), Child carers: child-led research with childre who are carers. Case studies from Agola, Nigeria, Ugada ad Zimbabwe. Available at: e/54_12080.htm Youg Carers Project South Africa is a collaboratio betwee the Uiversity of Oxford, the South Africa Natioal Govermet ad three South Africa uiversities. Available at: org.za/ The childre give me a lot of happiess. Seeig them i frot of me is like a mirror to my life. Everythig bad that has happeed to me i the past seems worthwhile whe I see them healthy ad happy ad goig to school. Gradmother from Suda 21 Childre ad youg adults i AIDS-affected households ofte take o sigificat carig roles for sick or older carers. Research is buildig a picture of the positive 17. Hosegood, V. et al. (2008), Demographic evidece of family ad household chages i respose to the effects of HIV/AIDS i Souther Africa: implicatios for efforts to stregthe families, JLICA. 18. Evas, R. (2010), The experieces ad priorities of youg people who care for their sibligs i Tazaia ad Ugada, Research Report, School of Huma ad Evirometal Scieces, Uiversity of Readig. Save the Childre (2010), Child carers: child-led research with childre who are carers. Four case studies; Agola, Nigeria, Ugada ad Zimbabwe. Available at: HelpAge Iteratioal/Iteratioal HIV/AIDS Alliace (2003), Forgotte families: older people as carers for orphas ad vulerable childre. 20. Cluver, L. (2010), Research preseted at Orphas ad Vulerable Childre coferece, South Africa, November Available at: HelpAge Iteratioal (2011), Presetatio by Rachel Alboe at Positively Carig Evet, 22 March Available at: 17 family-cetred hiv programmig for childre: what do we eed to kow about families?

20 potetial of these roles. 22 As well as developig resiliece ad copig skills, childre report added beefits of closer relatioships with sibligs ad older carers, ad commuity recogitio for their carig work. A umber of reports have called for the specific eeds of older-headed households, 23 child carers 24 ad households headed by youg adults 25 to be take ito accout i the formulatio of policy ad programme itervetios. For example, whe plaig itervetios to stregthe the ecoomic security of the family, the ability of older people to egage i icome-geeratig activities eeds to be assessed alogside the specific ecoomic vulerability of youg adults who are sole carers for childre. Social protectio itervetios have to be effective for supportig older-headed families with o adult who is able to ear a icome, as well as families with child carers. These itervetios should iclude grats ad pesios that alleviate fiacial burdes ad eable childre to stay i school. They also eed to help older carers to access services for themselves, ad provide support aroud legal ad iheritace issues. What characteristics of families are relevat to desigig programmes? Chage over time It is importat to remember that families do ot always stay the same. Over time, chages occur i the family group ad the roles that members play withi it. This may be as a cosequece of the death of a adult, resultig i childre leavig school to ear a icome or be absorbed ito a ew family uit. Sometimes family roles may chage with the absece of a paret who has migrated for work, leavig childre i carig roles. These chages ca also affect the ecoomic situatio of the family ad its ability to care for childre ad other family members. As families udergo so much chage, it is importat to regularly reassess their capacity to cope ad thrive throughout the programme life. Power dyamics ad geder Geder ad power play a importat role i the dyamics of families. They affect the iteractios betwee members ad the expectatios of idividuals. They also affect the socialisatio of boys ad girls, ad the subsequet roles they play. Geder ad power ifluece decisio-makig withi families, especially aroud the allocatio of resources or access to ecoomic ad educatioal opportuities. Age, geder ad family positio ca attribute power, ad the misuse of power ca lead to uequal decisio-makig ad distributio of resources withi a household. A illustratio of this is the burde of care placed o wome ad girls for family members ad household chores specifically the care of people livig with HIV. Girls are more likely to be removed from school to take o carig roles, ad i ecoomically deprived households resources for educatio are more likely to be allocated to boys. The impact of social orms aroud geder ca mea that wome ad girls have limited participatio ad ifluece i commuity decisiomakig. It ca also mea they are more vulerable to violece ad abuse withi the family. This has a direct impact o their ability to make iformed decisios aroud their health care, icludig if, whe ad where to test for HIV ad access. 22. Skovdal, M. et al. (2009), Youg carers as social actors: copig strategies of childre carig for ailig or ageig guardias i Wester Keya, Social Sciece ad Medicie 69(4): The Iteratioal Network for Caregivig Childre: HelpAge, Iteratioal/Iteratioal HIV/AIDS Alliace (2003), Forgotte families: older people as carers for orphas ad vulerable childre. 24. Save the Childre (2010), Child carers: child-led research with childre who are carers. Four case studies; Agola, Nigeria, Ugada ad Zimbabwe. Available at: Richter, L. ad Desmod, C. (2008), Targetig AIDS orphas ad child-headed households? A perspective from atioal surveys i South Africa , AIDS Care 20(9) family-cetred hiv programmig for childre: what do we eed to kow about families?

21 Cotexts i which families live I order to desig effective programmes ad policy iitiatives, we eed to uderstad the cotext i which families exist ad what iflueces them. We also eed to uderstad the places from which families access support. Across the world families rarely exist i isolatio. I almost all circumstaces families are based withi a wider commuity ad society, with its structures, policies, social orms ad attitudes, systems ad services. The cotext i which families exist ca be represeted i the simple diagram o the right. policy/structural Services Commuity Family/idividual Who are the people ad what are the places that support families? what is a commuity? As with family, there is o uiversally accepted defiitio of commuity. Commuity is ofte take to mea the people livig i a particular geographical area, such as a village or eighbourhood. However, commuity ca also mea people uited by a commo backgroud, laguage or culture, such as a group of refugees from oe coutry. It ca mea people uited by a commo faith or iterest, or by occupatio, such as a commuity of sex workers livig together. I this sese, families may be part of more tha oe commuity. As this diagram shows, commuities ca be overlappig or distict, located together or across geographic locatios. Gradmother Shilpal was bor i the state of Tamil Nadu ad speaks Tamil is a Hidu lives i a village has exteded family members i the village, Cheai ad Mumbai belogs to the Frieds Group for carers of HIV-positive childre has a patch outside the market for sellig vegetables with other wome belogs to a cooperative sellig embroidery to a regioal craft ceter 19 family-cetred hiv programmig for childre: what do we eed to kow about families?

22 The commuities to which a family belogs may have positive or egative effects o that family. Positive effects may be i the form of providig families with material or practical help, through metorig child-headed families or child carers, or providig emotioal support. Negative impacts may be i the form of stigma ad discrimiatio, ad isolatio of margialised groups. Lookig at the positive support a commuity may provide to childre ad families affected by HIV, a umber of commuity resposes are commo: iformal fiacial or i-kid support provided by exteded families, frieds or other commuity members commuity-based groups with specific roles, such as health committees, child welfare committees, youth groups, peer support groups, savigs ad loas groups pre-existig groups, such as faith groups or schools, with programmes to provide support to families for example, school feedig programmes ad church-based family outreach. Negative effects might iclude excludig childre ad their families from commuity activities because they are stigmatised due to their HIV status. HIV positive people may ot be allowed to participate i church, ad childre from affected households may be uable to play with eighbours or eve atted school. The childre of sex workers ca be excluded from support programmes for childre affected by HIV because of stigma, ad childre may be rescued from poor families for a better life. Childre may also be forcibly removed from crimialised groups such as people who use drugs ad those i coflict with the law, based o precoceived ideas about their ability to paret. It is importat to assess these effects whe we pla programmes so that we ca build o the positive supports ad miimise the egative impacts, as well as help families to cope with them. As we saw i Chapter 1, JLICA ad UNICEF recogise the potetial of commuities to provide support to families affected by HIV. Both emphasise the importace of stregtheig the systems i commuities that provide services, protectio ad support. We look at how we ca egage commuity groups i our programme i Chapter 4. The family ad the commuity exist withi a wider society, usually a coutry. The quality ad availability of health, educatio ad welfare services provided by the govermet, ad the laws ad policies it implemets, will have a sigificat impact o the ability of families to fuctio ad care for their childre affected by HIV. Services Families usually have access to certai types of services that help them care for childre affected by HIV or support them to fuctio as a family. We eed to assess the accessibility, availability ad quality of services that are available to the families we are workig with especially for those most margialised. This will eable us to create referral pathways ad lik families to all available supports they eed. The availability ad quality of essetial services such as social welfare ad health will have a dramatic impact o the ability of families to care for childre. Families ca better support their childre i coutries where atioal social protectio systems provide social welfare beefits ad ecoomic support, ad where health systems provide atiretroviral therapy, tha families i places where these services do ot exist. what is social welfare? Social welfare is the provisio of beefits ad services by govermet, civil society ad other actors to help people meet basic eeds, to alleviate poverty, ad to improve the wellbeig of idividuals, families ad commuities. Social welfare systems A strog social welfare system acts as a critical safety et for vulerable childre ad their families. Whe the system fuctios well, families ca access a rage of services, such as pesios, grats, isurace, care facilities ad early childhood 20 family-cetred hiv programmig for childre: what do we eed to kow about families?

23 educatio. However, i may coutries these services are o-existet or weakeed through lack of ivestmet, traiig ad supervisio. Iteratioal attetio is ow focused o stregtheig systems for social welfare 26 to build up the workforce ad professioalise it. This will support family-stregtheig itervetios ad child protectio systems, ad promote their sustaiability. Similarly, health services are ofte weak, uder-resourced ad uder-staffed. I respose, there has bee major global focus o helpig coutries to improve their health services through a process kow as health systems stregtheig. Families, structures ad policy Whe plaig family-cetred programmes, we eed to thik about the policies ad laws withi a coutry that ca either make it easier or more difficult for families to care for their childre affected by HIV. Laws ad policies that will help families care for childre affected by HIV iclude: laws that promote the rights of childre ad wome through social protectio itervetios such as birth registratio, iheritace ad property rights that respect wome as equal parters ad their childre as beeficiaries policies that target resources to family-based care, ad see istitutioal care for childre as a last resort social protectio policies that provide pesios ad grats to support vulerable families policies that esure the rights of families to be ivolved i the health ad wellbeig of their childre, ad esure that childre receive services i the cotext of their families. key resources Child protectio system mappig ad assessmet toolkit: Available at: protectio/57929_58020.html Miistry of Geder Equality ad Child Welfare Directorate of Child Welfare (2007), A huma resources ad capacity gap aalysis: Improvig child welfare services. Social Welfare Stregtheig Coferece 2010 resources: php?c=99 USAID (2009), Huma capacity withi child welfare systems: the social work workforce i Africa. Wulczy, F. et al. (2010), Adaptig a systems approach to child protectio: key cocepts ad cosideratios, UNICEF. Laws ad policies that may make it more difficult for families to care for childre affected by HIV iclude: laws that discrimiate agaist populatios such as people who use drugs ad remove childre from their care laws that prohibit sex work, which ca mea that whe sex workers are put i priso their childre are left aloe or i the care of others laws o birth registratio that require a father s ame o the certificate before issue, which discrimiate agaist wome with o parters policies that exclude HIV-positive childre from schools laws that crimialise HIV trasmissio. Broader attitudes withi society also impact o families. Certai groups may ot be crimialised or excluded by policies but by attitudes. Discrimiatio aroud sexuality, ethicity or HIV status ca also result i exclusio family-cetred hiv programmig for childre: what do we eed to kow about families?

24 3 How do we desig a family-cetred programme? I this chapter: Priciples i plaig ad desig 22 family-cetred hiv programmig for childre: what do we eed to kow about families?

25 Priciples i plaig ad desig The Alliace good practice guide o plaig ca help with the overall developmet of our programmes, but below are some suggestios o how to make our approach more family cetred. 27 Whe developig programmes for childre, we eed to assess: Who are the key people carig for the childre? What are their persoal, social ad ecoomic resources? Do ay of the childre provide care? What does the child do withi the family? What is the impact of HIV o the child ad how does it affect their developmet? key resources DiPrete Brow, L. (2008), Establishig service stadards for improvig quality of OVC services: a facilitator s guide 3, Pact ad Uiversity Research Co, LLC for the Uited States Agecy for Iteratioal Developmet. Available at: org/galleries/resource-ceter/ Facilitator_Guide_OVC_ Stadards_Nov08.pdf The assessmet should focus o the capacities ad eeds of all family members rather tha lookig oly at the eeds of idividual childre. It should assess: the capacities ad resources available withi the commuity to support the family, ad ay egative iflueces of the commuity i which the family lives, such as exclusio ad stigma whether treatmet programmes map family members, ad the eed for cousellig ad testig, prevetio ad treatmet for other family members the availability of services barriers to accessig services, such as missig idetity documets like birth certificates the impact of atioal laws ad policies o the family, ad the support available. MEASURE (2009), Child status idex: a tool for assessig the well-beig of orphas ad vulerable childre. Available at: measure/tools/child-health/childstatus-idex Our programme desig should: support family-cetred care of childre ad reiforce families capacities to stay together build the capacity of commuities to assist i the care ad support of childre affected by HIV ackowledge that withi may commuities people will have their ow prejudices or miscoceptios about who is vulerable or which families are etitled to support. Therefore evidece for targetig should be gathered i differet ways recogise ad reiforce the likages betwee the supports ad services provided at each level promote the delivery of atioal-level family-cetred services such as atiretroviral therapy cliics o the same site for adults ad childre promote the implemetatio of policies ad legal frameworks that support families to care for childre, ad optimise the access to ad quality of services for people livig with HIV itegrate ad combie services for adults ad childre i commo geographic locatios with family services such as volutary cousellig ad testig, ateatal care, PPTCT, ad treatmet programmes that cosider childre ad how to reach them build i plas for evaluatio from the outset to eable the effectiveess of family-cetred workig to be evaluated 27. Iteratioal HIV/AIDS Alliace, Good Practice Guide: Results-based plaig (forthcomig). 23 family-cetred hiv programmig for childre: how do we desig a family-cetred programme?

26 develop idicators of iputs at the family level ad the related impacts for the wellbeig of childre. Global idicators focus o broad idicators such as households received free basic exteral support i carig for the child, 28 which tells us very little about the outcomes for childre i terms of health or access to educatio 29 recogise that tools such as the Child Status Idex 30 or the orphas ad vulerable childre wellbeig tool 31 focus o the outcomes for childre from the child s perspective but are limited i capturig their broader family cotext. Our programmes eed to iclude measures of household food security, wealth, the attedace ad attaimet i school of all childre, ad the health ad wellbeig of all family members. As we pla the implemetatio of our family-cetred programmes, we should thik about the itervetios eeded at differet levels with families; i commuities; with service providers; ad to ifluece policies impactig childre ad families affected by HIV to esure families are able to access the supports ad services they eed. Do t forget to iclude us i your plaig. We kow best what we eed ad we ca give you the iside story. 28. UNAIDS (2009), Moitorig the Declaratio of Commitmet o HIV/AIDS: guidelies o costructio of core idicators: 2010 reportig. 29. Schek, K. (2008), What have we leart? A review of evaluatio evidece o commuity itervetios providig care ad support to childre who have bee orphaed ad redered vulerable, JLICA. 30. MEASURE (2009), Child status idex: a tool for assessig the well-beig of orphas ad vulerable childre. Available at: Seefeld, S. et al. (2009), Orphas ad vulerable childre wellbeig tool, Catholic Relief Services. 24 family-cetred hiv programmig for childre: how do we desig a family-cetred programme?

27 The diagram below gives examples of itervetios that ca be developed at these four levels. However, it is likely that our orgaisatios may ot have the capacity or techical expertise to implemet all of the itervetios eeded. If that is the case, we ca work i collaboratio with other agecies likig to existig services, or ask aother orgaisatio with a particular expertise to take o the itervetio. a summary of itervetios at all levels family level Comprehesive health iformatio Family home-based care Early childhood developmet Food aid for family ad utritioal support Disclosure of HIV status withi families Family cousellig Paretig support Family reuificatio Family treatmet adherece support Legal support iheritace, property Ifat feedig support ad iformatio to household COMMUNITY level Commuity systems stregtheig (commuity groups, volutary support health ad child protectio committees etc) Local advocacy o child rights ad protectio Support child welfare committees Promote childre s groups ad etworks Establish commuity watchdogs Commuity structures leaders, peer/age groups Commuity savigs for family stregtheig Itroduce commuity referral agets Support for commuity health workers i case maagemet (icludig traditioal birth attedats), commuity care coalitios SERVICE LEVEL Family cliics at health facilities Traiig health workers i family-cetred care Likig ad referral of childre through differet services volutary cousellig ad testig, PPTCT, materal ad childre health, sexual ad reproductive health, TB Early childhood developmet services Primary ad secodary schoolig, vocatioal traiig, youth employmet Childcare facilities Itegratig HIV issues ito educatio system Itegrated family services ad cotiuum of care approach Co-located service for adults ad childre Child protectio ad legal services for families Work with police ad judiciary o child rights ad protectio POLICY AND STRUCTURAL LEVEL Laws ad polices childre s policies, iheritace ad property rights Legal support Orphas ad vulerable childre atioal plas for actio Implemetatio of the Covetio o the Rights of the Child ad rights-based approach Birth ad civil registratio Decrimialisatio of sex work ad drug use, decrimialisatio of HIV trasmissio Policies o alterative care, deistitutioalisatio of childre Policies o PPTCT, paediatric atiretroviral treatmet, rapid ifat testig ad diagostics availability Social welfare etitlemets widows pesios, child grats, ratio cards, poverty certificates Social protectio mechaisms state health isurace, child protectio systems 25 family-cetred hiv programmig for childre: how do we desig a family-cetred programme?

28 4 Family-cetred programmes i practice I this chapter: Health Ecoomic stregtheig Food ad utritio Educatio ad early childhood developmet Care ad protectio Emotioal ad psychological support 26 family-cetred hiv programmig for childre: how do we desig a family-cetred programme?

29 How do we go about implemetig a family-cetred programme, or adaptig our curret programmes to be more family cetred? I order to look practically at this, we eed to cosider six commo sectors i which itervetios are provided for childre ad their families. I each sector we offer ideas about how to implemet programmes i a more family-cetred way, ad illustrate these with case studies of programmes that have started usig family-cetred approaches. The sectors are: Health Ecoomic stregtheig Food ad utritio Educatio ad early childhood developmet Care ad protectio Emotioal ad psychological support Health I this sectio we focus o how health services for childre livig with ad affected by HIV ca be delivered i a way that is most useful ad supportive to families. We look at how a umber of services ca be delivered together i a itegrated way, ad how services such as PPTCT, atiretroviral therapy, ad home-based ad palliative care ca be provided i a way that helps idetify childre i eed of care ad supports them withi their family etwork. Providig health services for family members together i oe place Recet work lookig at how health services i developig coutries ca be delivered i a family-cetred way has suggested a umber of differet models. A recet systematic review of published papers ad abstracts documetig programmes curretly deliverig family-cetred treatmet models for childre has demostrated their diversity. The programmes differ i types of services available to family members, method of erolmet of patiets ito the programme, site of delivery of family-cetred services, ad the qualificatios of the staff deliverig the programme. 32 Case maagemet is a key priciple of family-cetred HIV services. 34 It uses the family as the basis of the cosultatio, with family members receivig moitorig ad treatmet together i the same cliic. Case maagemet meas that commuity-based health workers or home-based care workers ca idetify childre through their cotact with the whole family. They ca the address the childre s eeds withi the cotext of their family ad home. Family-cetred case maagemet requires uderstadig the relatioships ad power dyamics withi the family. It meas takig ito accout the differet eeds of adults ad childre. It also meas esurig that resposes deliver the best outcomes for childre by stregtheig ad usig family support to the greatest effect. key resources Harriso, K. (2009), Buildig hope: supportig work with childre affected by HIV ad AIDS, Macmilla/Iteratioal HIV/AIDS Alliace. Iteratioal HIV/AIDS Alliace (2003), Buildig blocks: Africawide briefig otes. Resources for commuities workig with orphas ad vulerable childre. Available at: org/publicatiosdetails. aspx?id=106 Steiitz, L. (2009), The way we care: a guide for maagers of programs servig vulerable childre ad youth, Family Health Iteratioal. Family-cetred care, which offers HIV/AIDS prevetio, testig, care, ad treatmet to the whole family at oe locatio, has bee show to icrease casefidig of wome ad childre, ad also icreases treatmet service uptake. 33 My daughter s ad my cliic appoitmets are o differet days so I have to fid trasport moey twice a moth. Sometimes whe I do t have eough moey for trasport oe of us has to stop our treatmet. I wish it were possible to see both of us at the same cliic ad o the same day. Programmes should cosider: promotig access to both adult ad paediatric specialist health workers to meet the differet eeds of adults ad childre i oe locatio (i resource- 32. Leeper, S.C. et al. (2010), Lessos leared from family-cetred models of treatmet for childre livig with HIV: curret approach ad future directios, Joural of the Iteratioal AIDS Society 13(Suppl2). 33. DeGearo, V. ad Zeitz, P. (2009), Embracig a family-cetred respose to the HIV/AIDS epidemic for the elimiatio of pediatric AIDS, Global Public Health 4(4): Leeper, S.C. et al. (2010), Lessos leared from family-cetred models of treatmet for childre livig with HIV: curret approach ad future directios, Joural of the Iteratioal AIDS Society 13(Suppl2). 27 family-cetred hiv programmig for childre: family-cetred programmes i practice

30 limited settigs this may mea additioal traiig so health workers ca respod to the specific eeds of childre ad commuicate effectively with differet age groups) creatig likages ad referrals betwee departmets ad service areas, where case maagemet is ot possible, to esure that all family members ca access the rage of services they eed providig services together to improve care to families ad reduce the time ad cost of travellig to separate service providers adaptig idividual health itervetios usig a family-cetred approach so they have a greater impact for families ad childre; for example, ecouragig me to accompay their parters for PPTCT, ad referrig sibligs for testig through PPTCT itervetios. case study: providig commuity-based care for all the family i zambia Bwafwao Commuity Based Care Orgaisatio is providig a comprehesive rage of itegrated services for a commuity of aroud 50,000 people just outside Lusaka, Zambia icludig over 16,000 childre. The services are maagig to reach where state providers curretly caot: the most deprived people i Zambia. Bwafwao ( Helpig oe aother ) was created i 1996 ad has grow to provide services for HIV, TB ad other diseases, together with treatmet, care ad support for childre. Bwafwao specialises i commuitybased care, with all the services provided i the same place: laboratory work, cousellig, testig ad PPTCT services. Wheever a idividual or family is assessed at home or i the Bwafwao cliic for HIV, TB or other diseases, a wider assessmet by oe of the orgaisatio s 500 commuity carers also takes place. This icludes assessig the social, psychosocial, ecoomic ad livelihood prospects of all family members. Whe pregat wome who are livig with HIV receive treatmet ad cousellig, their parters are also ivited to receive it. The whe the baby is bor, the baby receives treatmet too, icludig follow up from a paediatricia ad psychological support if eeded. The orgaisatio also offers cousellig, icome support ad skills traiig for sigle mothers ad childre who have extra resposibilities at home. Bwafwao also provides a sexual ad reproductive health educatio programme, ad materal ad child health services. There is disease screeig for childre, a home-based care programme to provide utritio for childre, ad a paediatric atiretroviral therapy programme, as well as a educatio programme that icludes access to grats for school fees ad materials. case study: usig a case maagemet approach to care for parets with hiv i vietam Family Health Iteratioal, i partership with Vietam s Miistry of Health ad district health cetres, established seve cotiuum-of-care sites with a focus o care ad treatmet for parets with HIV. The aim was to reduce orphaig ad support those who were orphaed to remai withi their exteded families. Usig a case maagemet approach, Family Health Iteratioal established a system of liked services: ipatiet care ad services for childre affected by HIV, as well as a outpatiet cliic; TB/HIV likages; support groups for people livig with HIV; ad home-based care teams. Each site also had a committee resposible for coordiatig HIV services ad improvig referrals. The committees were made up of commuity leaders, service providers, affected families ad idividuals, ad represetatives of orgaisatios resposible for the welfare of childre. Family-cetred care coordiators were also based i the cliics as case maagers. They assessed eeds, helped to develop a family care pla, ad liked families to services. The coordiators worked closely with home-based care teams, who provided follow-up ad family care i the home, icludig support to access schoolig, food ad essetial child health services. The teams also helped families pla for the future ad idetify guardias. I may cotiuum-of-care sites, care coordiators ad home-based care teams ra playgroups for childre, ad orgaised family days that icluded life skills discussios ad fu activities. Durig family cliic days, outpatiet staff provided care for etire families ad assessed HIV-positive childre ad their carers together. The family the saw a adherece cousellor ad visited the family-cetred care coordiator. 28 family-cetred hiv programmig for childre: family-cetred programmes i practice

31 Prevetio of paret-to-child trasmissio Programmes to prevet vertical trasmissio of HIV from paret to child were the focus of much of the early thikig aroud developig family-cetred services for people livig with HIV. Historically, PPTCT programmes focused o itervetios that directly reduce the risk of trasmissio of HIV from the mother to her baby durig pregacy, delivery or via breastfeedig. Family-cetred PPTCT models have expaded this approach to cosider the broader health eeds of the family, particularly those of the mother ad child ad across the four progs of PPTCT (see table o page 30). This approach draws o evidece of the log-term outcomes for childre beig improved by good-quality ateatal care ad healthy mothers who are able to access HIV treatmet, as well as likig mother ad baby pairs to broader child health programmes. More recetly, itegratig early childhood developmet ad care ad support services for childre ito the PPTCT model has bee recommeded. This is sometimes referred to as PMTCT-Plus. 35 The table o page 30 summarises the key compoets of family-cetred PPTCT services from the time of idetificatio of the pregat woma util early childhood. The compoets i bold ca be icluded ito PPTCT programmes to achieve a more itegrated service that is family cetred. This etails providig services to other family members beyod the mother ad ewbor child. key resources UNAIDS (2011), Coutdow to zero: global pla towards the elimiatio of ew HIV ifectios amog childre by 2015 ad keepig their mothers alive. UNAIDS (2011), Promisig practices i commuity egagemet for the elimiatio of ew HIV ifectios i childre by 2015 ad keepig their mothers alive. WHO (2010), PMTCT strategic visio : prevetig mother-to-child trasmissio of HIV to reach the UNGASS ad Milleium Developmet Goals. Globally, there has bee sigificat progress i reducig trasmissio of HIV from mothers to their babies. However, there are may coutries ad commuities where there is still limited coverage of PPTCT services ad where babies cotiue to acquire HIV through vertical trasmissio. For may commuities, stigma, discrimiatio ad crimialisatio mea that mothers ad their babies will cotiue to be preveted from accessig prevetio itervetios, family plaig support ad PPTCT services uless we challege the attitudes, laws ad policies that stad i the way of the most vulerable families takig up services. Some of my frieds use drugs ad they face a lot of harassmet from law eforcemet. Maybe this is the reaso why they do t seek health services. They do t eve wat to cosult our doctor i the drop-i cetre. They come oly whe the problem is very serious. 35. Betacourt, T.S. et al. (2010), Family-cetred approaches to the prevetio of mother to child trasmissio of HIV, Joural of the Iteratioal AIDS Society 13(Suppl2). 29 family-cetred hiv programmig for childre: family-cetred programmes i practice

32 key compoets of family-cetred prevetio of paret-to-child trasmissio prog 1 prog 2 prog 3 HIV prevetio amog wome ad me of reproductive age provided through commuity structures ad withi reproductive health services such as ateatal, postpartum ad postatal care, ad at other health ad HIV service delivery poits. Address structural drivers of HIV through peer to peer educatio led by people livig with HIV, workig with most affected groups. Cousellig, support, ad cotraceptives provided to wome ad me livig with HIV to meet their eeds for family plaig ad spacig of births, ad to optimise their health outcomes ad those of their childre. Referrals from family plaig services to other health services. Work with commuities to promote early ateatal care attedace. HIV testig ad cousellig provided to pregat wome livig with HIV ad their parters, together with access to the atiretroviral drugs eeded to prevet HIV ifectio from beig passed o to their babies durig pregacy, delivery ad breastfeedig. prog 4 before birth durig/after birth weeks after log-term CD4 test, treatmet for HIV-positive mother. Ateatal care. Early childhood developmet cousellig. Assessmet of additioal household vulerability (food isecurity). Social worker, commuity health worker or urse for early childhood developmet. Referral for utritio. Cousel o PPTCT. Father ivolvemet. Stigma reductio ad disclosure support. Delivery assisted by skilled birth attedat. Caesarea sectio available. Risk assessmet available. Atiretrovirals for mother ad child ad others i family as eeded. Cousellig o feedig. Paretig ad commuicatio support. Icrease family egagemet with ew baby. Assess mother s physical ad metal wellbeig. Feedig ad cousellig. Immuisatios begi. HIV testig for ifats. Referrals to support programmes. Child health worker home visits, iclude early childhood developmet activities. Ivolvemet of other family members i early childhood developmet cotet. Child health workers assess ad moitor child growth ad developmet. Ogoig early childhood developmet activities with family. Pre-school access. Carers metal ad physical health. Nutritio, social cotexts, ecoomic opportuity. Follow-up: geeral ad specialised paediatric care. Family plaig. Adapted from Betacourt, T. ad Smith Fawzi, M.K. (2009), Family-cetered approaches to the itegratio of PMTCT + ECD: LG3: expadig access to services ad protectig huma rights. Available at: The health eeds of the whole family are importat whe tacklig the prevetio of HIV trasmissio from paret to child. 30 family-cetred hiv programmig for childre: family-cetred programmes i practice

33 case study: promotig family-cetred pptct services The MTCT-Plus Iitiative is kow iteratioally as a model programme for family-based care, ad early diagosis ad care of ifats exposed ad ifected with HIV. A core belief of the Iitiative is that HIV is a family health issue, ad that all members of the family should be icluded i care ad treatmet. This is why the Iitiative makes sure that all HIV services, icludig atiretroviral therapy, are exteded to every mother s childre livig with HIV, parters ad other family members. The services are desiged to be comprehesive, with a focus o keepig each member of the family healthy ad egaged i log-term care. I additio to atiretroviral therapy for those who are eligible, a variety of HIV-related ad primary health care services are also provided. These iclude opportuistic ifectio prophylaxis; screeig ad treatmet for other diseases, particularly tuberculosis; utritioal evaluatio ad support; access to family plaig; ad cliical ad immuologic moitorig. Psychological support ad adherece cousellig by cousellors or peers are cosidered critical compoets of the MTCT-Plus Iitiative. Paediatric care is a essetial part of family-focused services. All HIV-exposed ifats are moitored util HIV ifectio ca be defiitively diagosed or excluded. Each site has access to early virological tests to provide timely diagosis of HIV ifectio durig the first moths of life. All childre have regular assessmets of growth, developmetal status ad CD4 couts while receivig opportuistic ifectio prophylaxis ad atiretroviral therapy, if eligible. The MTCT-Plus model of care has bee implemeted through 14 cliical programmes based i ie coutries throughout sub-sahara Africa ad Asia. After eight years, it has provided life-savig care ad treatmet to more tha 16,000 adults ad childre, ad has made valuable cotributios toward icreasig commuity awareess ad preservig families. Sice the early 2000s the Iitiative has bee a etry poit for reachig family members with comprehesive care services for families affected by HIV. The programme goes beyod prevetio of vertical trasmissio to iclude safe delivery, atiretroviral therapy, early childhood developmet, breastfeedig ad utritioal advice, atibiotic prophylaxis, family testig, TB care, vacciatios, ad sexual ad reproductive health ad psychosocial support. There have bee positive results i the erolmet of HIVpositive pregat wome ito the programme, but erolmet of childre has bee less successful. A umber of suggestios have bee made about the remaiig barriers for families that eed to be addressed, such as family disclosure, stigma, geder iequity ad social exclusio. See mtctplus/who.html case study: gettig me ivolved i pptct i keya Zigatia Maisha ( Carefully cosider life ) is a Elizabeth Glaser Paediatric AIDS Foudatio programme i wester Keya. Its aim is to get me more ivolved i PPTCT. To this ed, the programme has bee establishig exclusively male cliics because existig cliics ca be off-puttig for me sice they ted to be domiated by female staff ad patiets. At these me-oly health cetres HIV-positive me form support groups, ad both HIV-positive ad egative me are couselled o the importace of accompayig their parters for ateatal visits. The me also receive educatio o issues that are usually taboo for me, such as the importace of exclusive breastfeedig for HIV-positive mothers. The programme has adapted ateatal cliics to make them more attractive for me to atted, by givig priority to wome who atted with me ad to me who brig their childre. Over 15,000 me have erolled i the project sice Oe ma commeted: I am taught about breastfeedig ad utritio for me, my wife ad our child. Whe my wife is t well I just take the child to the cliic... I ever thought I would go to the cliic like a woma. We ot oly escort [treatmet] defaulters to the cliic, but we also try to reach out to the others who are missig out ad we tell them: We are me as you are ad we are i this ad our spouses ad childre are beefitig. We explai to them the beefits ad we have see coverts. Pastor Joseph Muhemberi, support group leader See 31 family-cetred hiv programmig for childre: family-cetred programmes i practice

34 case study: supportig mothers at risk of abadoig their ewbor childre i ukraie, russia ad vietam The MAMA+ project focuses o prevetig childre bor to wome livig with HIV ad usig drugs from beig abadoed. HealthRight Iteratioal establishes parterships with materity hospitals, AIDS cetres ad other local orgaisatios, who refer HIV-positive pregat wome at risk of abadoig their childre to the MAMA+ project. The case maagemet team provides cousellig, comprehesive HIV iformatio, ad a log-term pla for wome who choose to participate i the programme. This icludes PPTCT services, referral for harm reductio ad treatmet services, psychosocial support to mothers, ad paretig support. This combiatio is desiged to help mothers care cofidetly for their ewbor ifats ad therefore reduce the risk of abadomet. Through MAMA+ cetres, wome are also able to access other social services. Ifat day care eables mothers to atted vocatioal traiig, job iterviews, legal appoitmets or access other services. The MAMA+ team provides support to HIV-positive mothers ad their families through cousellig ad family visits. I additio, referral etworks with public ad ogovermetal agecies help families to access welfare support, educatio ad job placemet. They also provide care for childre, such as utritioal support ad medicie. Previously up 20% of childre bor to HIV-positive mothers were abadoed i materity hospitals. The project has led to sigificat reductios i this outcome. See ukraie-mama HIV cousellig ad testig Family-cetred cousellig ad testig recogises that HIV trasmissio occurs mostly withi families, from paret to child ad betwee parters ad spouses. It also recogises that diagosis, disclosure, treatmet iitiatio ad adherece ca be positively supported by families. Takig a family-cetred approach to testig has the potetial to icrease the focus o paediatric testig ad treatmet. It ca help idetify utested childre ad promote early idetificatio through ifat testig as part of PPTCT. Programmes should cosider: makig early cotact with families, especially through PPTCT, to icrease early ifat diagosis, iitiatio of co-trimoxazole 39 prophylaxis ad testig of youg childre who may otherwise remai utested takig testig ito the home as a effective way of reachig people previously utested, ad supportig family disclosure (while recogisig that maitaiig idividual iformed coset ad cofidetiality may be difficult i families where some members have authority or power over others ad may coerce them ito testig or sharig their results) recogisig the possibility of egative impacts of a positive test, such as rejectio or domestic violece, ad esurig they are addressed withi the family as well as the resultig eed for support to parets recogisig the specific cosideratios aroud testig childre ad their right to be ivolved i decisios that affect their lives as well as the lifelog commitmet required of family members to a child s HIV treatmet ad care esurig that tests are doe i the best iterests of the child, ad that parets decisio about whe to test ad disclose results is doe i their child s best iterests esurig that whe testig childre there is coset for the cousellig as well as the testig process esurig that childre kow that they ca withdraw at ay time esurig that cousellors support childre to uderstad the implicatios of tests ad ext steps, depedig o the result. key resources Family Health Iteratioal Idia (2007), Protocol for child couselig o HIV testig, disclosure ad support. Huma Rights Watch (2003), Just die quietly: domestic violece ad wome s vulerability to HIV i Ugada. Mama, S. et al. (2001), HIV ad parter violece implicatios for HIV volutary couselig ad testig programs i Dar es Salaam, Tazaia, Populatio Coucil. 39. Co-trimoxazxole is a very cost-effective atibiotic that has bee prove to sigificatly reduce the rate of illess ad death amog HIV-exposed ifats ad HIV-positive childre. 32 family-cetred hiv programmig for childre: family-cetred programmes i practice

35 Disclosure Families play a importat role i tellig a child that they are HIV positive. Ofte the focus of programmatic itervetios is o traiig cliical staff to give the diagosis to childre. However, families ca help childre i the loger term to uderstad their diagosis, adapt positively ad pla for the future. Parets may be reluctat to disclose to a child for fear of the cosequeces. They may have cocers about the age to tell them or how to actually talk about it. A HIV diagosis for a child may also mea that parets eed to tell the child for the first time that they themselves have HIV. The parets may eed support to do this ad respod to the child s feeligs. May parets experiece fear ad guilt if their child is diagosed with HIV. Childre who acquire HIV as ifats have differet eeds to those those who become HIV-positive i adolescece, ad it is importat that programmes recogise this. Childre ifected periatally are likely to kow their diagosis, ad their status is usually ackowledged withi the family. But o reachig adolescece they face ew challeges about who to disclose to, especially whe eterig early sexual relatioships. key resources Domek, G. (2010), Debukig commo barriers to paediatric HIV disclosure, Joural of Tropical Pediatrics 56(6): Iteratioal HIV/AIDS Alliace (2011), Needs, challeges & opportuities: adolescets ad youg people livig with HIV i Zambia, Briefig Paper. Available at: org/icludes/publicatio/ ZambiaStudy.pdf WHO (2011), Guidelie o HIV disclosure cousellig for childre up to 12 years of age. World Health Orgaizatio. Programmes eed to cosider: supportig parets to disclose to their childre, ad helpig them uderstad the process of disclosure ad acceptace, ad the differet stages ad emotios a child may go through depedig o their age ad maturity recogisig that adolescets face specific challeges i sharig their HIV status with their families ad peers, ad adaptig to their diagosis addressig the differet psychosocial impacts o parets, adolescets ad childre of a positive diagosis, ad tailorig resposes accordigly developig psychological support to families over the log term as well as at the time of diagosis promotig amog cliical staff the value of egagig with families ad supportig them to carry out disclosure. I wish my mother had talked to me about her beig HIV positive. I thik she was afraid I would be too upset. She hid it from me but I kew there was somethig wrog. If I had kow maybe I could have helped her more. case study: uderstadig childre s eeds aroud disclosure i zambia Too ofte health providers ad families fail to share a child s HIV diagosis because they wat to protect the child from the psychological impacts. They may also be uclear about the most appropriate time ad way to do this. Elizabeth Glaser Paediatric AIDS Foudatio i Zambia has tried to address this by carryig out traiig for 121 cousellors, urses ad doctors to esure that childre s eeds aroud disclosure ad the psychosocial impacts are properly cosidered i the treatmet support give to them ad their families. Usig a Catholic Relief Service/AIDS Relief/Africa Network for Care of Childre Affected by HIV/AIDS traiig curriculum*, Elizabeth Glaser has supported frotlie health staff to better uderstad the processes for disclosure, the importace of family cousellig, ad the psychosocial impacts of disclosure o childre ad their carers. The traiig has draw o evidece of the positive impacts of early disclosure to childre i terms of treatmet adherece, self-esteem, psychosocial wellbeig, family relatioships ad commuicatio. It has also supported greater uderstadig of family dyamics, ad processes for follow-up after diagosis. As a result, there has bee a icreased retetio of childre i treatmet services. See Blog/August-2010/Talkig-to-Kids-About-the-Hard- Stuff-Disclosig-H * Catholic Relief Services (2009), Psychosocial care ad couselig for HIVifected childre ad adolescets: a traiig curriculum. 33 family-cetred hiv programmig for childre: family-cetred programmes i practice

36 Treatmet ad adherece There is sigificat evidece of the positive role that families play i supportig adherece for childre ad adolescets. A study i South Africa 40 demostrated high rates of adherece for childre o treatmet whe cared for by HIV-positive carers i the home. Family-cetred adherece programmes recogise that eve where a family is heavily impacted by HIV ad has more tha oe perso livig with HIV, this ca traslate ito positive outcomes i adherece. Treatmet services located together also have the potetial to reduce costs for families ad build o the uifyig features of the family i treatmet adherece. Programmes should cosider: tacklig commo barriers to adherece with the whole family, icludig costs of treatmet, trasport to cliics, utritio ad other health issues promotig mutual support betwee family members, which ca improve adherece providig utritioal support ad guidace to the whole family, alogside treatmet support recogisig that adherece issues chage with the age of the child, related to their uderstadig of treatmet, growig idepedece ad ability to take persoal resposibility for their ow treatmet. Through the Frieds Group I have leart how to idetify the side effects of treatmet i my gradchildre ad how to help them with medicatio. Before, I kew othig about HIV but people i the group have show me what to do. key resources Kodel, J. et al. (2009), The role of parets ad family members i ART treatmet adherece: evidece from Thailad, Populatio Studies Ceter Research Report Muller, A. et al. (2011), Predictors of adherece to atiretroviral treatmet ad therapeutic success amog childre i South Africa, AIDS Care 23(2): Williams, P. et al. (2006), Predictors of adherece to atiretroviral medicatios i childre ad adolescets with HIV ifectio, PEDIATRICS 118(6): case study: family-cetred adherece cousellig i burkia faso Iitiative Privée et Commuautaire de lutte cotre le VIH/SIDA (IPC) rus a programme i Burkia Faso supportig families affected by HIV. Childre are idetified through itervetios such as volutary cousellig ad testig, ateatal care ad PPTCT services, ad referred for care ad support. Oe aim of the programmes is to improve treatmet adherece. To this ed, the programme has traied 30 commuity carers i paediatric adherece ad adherece support. They work with the family to support disclosure ad build uderstadig aroud treatmet ad adherece. Childre ad families are supported through home visits ad family meetigs at Cetre Oasis. The cetre provides commuity meals, ad health staff are available to moitor ad support cliets. The cetre also facilitates support groups to help provide solidarity ad problem-solvig to improve adherece. Patiets lost to follow-up are visited at home. A greater sese of solidarity has bee reported ot oly amog the adults but also amog the childre livig with HIV. The project coordiator commeted: Betwee themselves, the childre kow who is adheret ad who is t. It s really true. If I take the example of Clemet, he is ot adheret ad the other childre have realised this. I the morigs, because their houses are ot far from oe aother, the childre go to Clemet s house to make him take his medicatio, or i the eveig after school (Clemet dawdles so he does t have to go home) eve at 6pm whe they are havig fu whe it s time, they accompay Clemet to his house to take his medicatio. 40. Williams, P. L. (2006), Predictors of adherece to atiretroviral medicatios i childre ad adolescets with HIV ifectio, Pediatrics 118(6): e family-cetred hiv programmig for childre: family-cetred programmes i practice

37 Home-based ad palliative care Too ofte programmes cater separately for people eedig home-based ad palliative care, ad childre affected by HIV ad AIDS. This ca make it difficult for families ad commuities to provide adequate care for both groups. Familycetred home-based care itegrates the itervetios to provide a rage of supports to a etire household affected by HIV. It recogises that childre are affected by HIV log before they become orphas. It also ackowledges that home-based carers are i a uique positio i the home to respod to the specific challeges childre face, whether they are ifected or affected by HIV. I the same way, palliative care programmes cover a comprehesive set of supports that address physical, psychosocial ad spiritual eeds of idividuals ad families who are dealig with life-threateig illess. Programmes recogise whether it is adults or childre who are faced with the impacts of life-threateig illess. They also ackowledge that family members play a key role i decisiomakig ad maagemet of treatmet, pai maagemet, ed-of-life care, psychological support for bereavemet, ad plaig for the future. key resources Bu, M. (2010), No secrets: helpig families ad carers talk to childre about life limitig illess, Diaa Pricess of Wales Memorial Fud. Amery, J. (ed.) (2010), Childre s palliative care i Africa, Oxford. Available at: survey_page.asp?sectio= &sectioTitle=Textboo k+for+childre%27s+palliative+ Care+i+Africa%3A+The+compr ehesive+ew+textbook Programmes should cosider: traiig home-based carers to provide physical ad emotioal care i the home for adults who are uwell, ad to assess all the family ad idetify the eeds of childre ad other vulerable adults i the household makig referrals for childre, with the family s coset, to other services as eeded home-based carers providig traiig ad support to childre who are carig for adult family members i order to address gaps i their kowledge, which ca be a sigificat source of axiety for them 41 addressig the specific eeds of childre i dealig with grief, bereavemet ad ed-of-life decisios supportig families i successio plaig, dealig with property ad lad iheritace, care optios ad death registratio providig practical advice about burial ad legal processes o the death of a family member, ad icludig childre i the decisio-makig process. case study: promotig palliative care i the home i keya Kitovu Mobile Palliative Care Service is based i Masaka, o the shores of Lake Victoria. The palliative care team visits patiets ad their families i their homes ad liaises closely with the commuity homebased care programme. This provides a holistic programme of cliical, psychological ad spiritual support withi the commuity, ad social cotact for the patiet ad family. The programme also works closely with other agecies ad the commuity to support schoolig, housig, food ad other eeds. Visitig patiets i their homes is cetral to them beig treated as people leadig their lives amog their families ad household activities, rather tha as people with a disease. Carers feel that they too are beig supported ad that the difficulties they experiece are recogised. They feel less isolated, receivig ot oly practical support but social ad fiacial support as well. Family structures withi the commuities are varied ad sometimes complicated, with differet roles beig assiged to family members. Workig withi the home, palliative care workers ca assess ad support family members i their differet roles, ad address misuderstadigs ad barriers to the care of patiets. The workers also exted their reach ito the commuity, promotig awareess of palliative care together with the family ad commuity supports eeded to build the resiliece of families. I additio to the programme s cliical ad persoal care ad pai maagemet support, they have a school fees programme ad they work with commuity o referrals for services. They also have liks to the micro-eterprise ad skills programmes ru by the commuity home-based care service ad other o-govermetal orgaisatios. See Save the Childre (2010), Child carers: child-led research with childre who are carers. Four case studies; Agola, Nigeria, Ugada ad Zimbabwe, Save the Childre. 35 family-cetred hiv programmig for childre: family-cetred programmes i practice

38 case study: traiig home-based carers to meet childre s eeds i mozambique Save the Childre i Mozambique has trasformed the orgaisatio s approach to home-based care so that it addresses the eeds of childre as well as adults. A evaluatio of a previous programme showed that the childre of home-based care patiets were ofte overlooked. I respose, Save the Childre developed a traiig programme for home-based care providers kow as activists to equip them with the kowledge ad skills to itegrate child-focused care ad support ito their work. Durig the traiig, home-based care activists lear how to: create a ope ad trustig eviromet durig home visits commuicate with childre uderstad ad promote child rights ad child protectio recogise sigs of physical, sexual ad emotioal abuse ad eglect uderstad how chroic illess or death of a loved oe affects childre help families to uderstad reasos for chages i the behaviour of childre help carers talk opely to childre about sickess ad death cousel families to maitai a healthy, safe ad pleasat atmosphere i the home. Whe home-based care activists visit a patiet, they talk to the childre to fid out if they are attedig school, how they are feelig ad if they have ay health problems. They also talk to carers to see if the family has birth certificates ad access to adequate food. The home-based care activist is able to assess the eeds of each child, idetify issues of cocer ad take appropriate actio. This might be referral of the child to a health cetre for treatmet, or referral to the orphas ad vulerable childre committee. The committee provides or facilitates access to psychosocial, educatioal ad utritioal support, ad appropriate shelter ad livelihoods support depedig o the eeds of the child. Key lessos idetified by the project are: Kowig that childre are beig take care of brigs great relief to the sick carers ad allows them to focus o their ow health ad recovery. Home-based care activists are well placed to gai the trust of childre ad their carers, ad coduct ogoig assessmets of the eeds ad wellbeig of childre. This is because they visit the households of their patiets twice a week ad build close relatioships with the families. Extedig care ad support to the childre i a household, i additio to the patiet, has bee very rewardig. Home-based care activists do ot see it as a extra burde. Sexual ad reproductive health ad rights, ad HIV prevetio Families play a key role i the sexual ad reproductive health of childre ad adolescets, ad have sigificat ifluece o the behaviours of youg people. However, may HIV prevetio ad sexual ad reproductive health ad rights programmes targetig childre ad youg people are carried out i schools, with little ivolvemet of families. Family ad social etworks are critical to behaviour chage. Families ca hider the prevetio of HIV ifectio amog adolescets, ad family coflict, violece ad separatio ca trigger or accelerate risk-takig amog youg people. Poor relatioships with parets ad other family members, compouded by structural issues such as uemploymet, poverty, crime ad margialisatio, ca icrease risk, with youg people turig to drugs ad sex work as a meas of copig or escape. key resources Iteratioal HIV/AIDS Alliace (2010), Good Practice Guide: Itegratio of HIV ad sexual ad reproductive health ad rights. Available at: org/publicatiosdetails. aspx?id=507 Iteratioal HIV/AIDS Alliace, Good Practice Guide: Prevetio (forthcomig). Programmes should cosider: esurig that childre ad youg people are supported with comprehesive sexual ad reproductive health iformatio ad access to services addressig the barriers to iformatio ad services that adults create through fear of corruptig childre or ecouragig promiscuity helpig parets to talk with their childre about sex ad sexuality supportig families to offer emotioal support to youg people i decisios aroud their sexuality, sexual behaviour ad relatioships 36 family-cetred hiv programmig for childre: family-cetred programmes i practice

39 addressig practices that ca make youg people more susceptible to HIV ifectio; for example, itergeeratioal sex, early marriage, female geital mutilatio, early sexual debut, laws o iheritace, dowry ad bride price supportig youg people to take resposibility, ad overcome peer pressure ad harmful geder orms stregtheig the capacity of families to care for childre through access to welfare support, cousellig, harm reductio services, paretig support ad legal assistace i order to reduce the likelihood of a child leavig family care ad becomig more susceptible to risk. case study: youg people s sexual ad reproductive health i swazilad ad zambia Family Life Associatio Swazilad ad Alliace Zambia are implemetig the Happy ad Healthy sexual ad reproductive health, rights ad HIV prevetio programme for youg people. It aims to create eviromets where youg people ca protect themselves, while ejoyig happy ad healthy relatioships ad expressig their sexuality safely. This icludes access to comprehesive sexual ad reproductive health services, such as educatio ad cousellig, life skills educatio, access to treatmet, ad psychosocial support. A particular aim of the project is to address the barriers youg people face i accessig sexual ad reproductive health ad HIV iformatio ad services because of the attitudes of adults i commuities. A key part of the programme is the facilitated iteractio betwee parets ad childre ad other commuity members. The programme promotes commuicatio i families to support youg people to have healthy ad positive sexual lives. It also ecourages participatory learig to help youg people uderstad the risks they face, ad eable adults to support them. The programme, which has reached 29,174 youg people to date, is mobilisig commuities ad empowerig youg people. I the process it is icreasig respect ad commuicatio betwee youg people ad adults, ad reducig harmful cultural practices. It is also icreasig geder equality ad respect for youg people s rights to sexual ad reproductive health ad HIV prevetio. Idaba [cosultative forum] was the best platform for the pupils to brig out critical issues that egatively affect the developmet of childre Solutios were discussed by parets ad pupils together. They idetified problems, ad parets promised to play a active role to esure that their childre grow up happy, healthy ad safe Teachers, health cetre maagemet ad parets agreed to work together effectively with the support of Youg, Happy, Healthy ad Safe. Idaba participat case study: supportig childre o the streets i ukraie Odessa Charity Foudatio Ukraie reaches over 420 of the 600 childre thought to be livig o the streets of Odessa. The charity has also supported over 10,000 childre ad families with social rehabilitatio ad itervetios to prevet homelessess ad eglect. Through mobile outreach services ad social rehabilitatio programmes, homeless or eglected adolescets ca be supported to achieve their potetial i society ad for some, a retur to family life. The Way Home programme offers shelter for childre idetified o the streets of Odessa by social patrols that go out durig the ight. Programme staff work with the youg people to resolve family coflicts ad address risk behaviors, such as sellig sex ad drug use, i order to start the process of reitegratio with families where possible. The Way Home also works with vulerable families to prevet family breakdow. It offers cousellig, coflict resolutio services, access to health care ad harm reductio services for drug use. It also helps to address violece i families. The programme supports idividuals ad families to register for ad access social welfare beefits. It also helps with educatio ad employmet, ad provides food, clothes, persoal hygiee requiremets ad medicies i order to alleviate ecoomic pressures i their lives. This comprehesive ad family-cetred approach aims to stregthe the resiliece of families ad prevet the crisis situatios that ca lead to childre movig oto the streets. 37 family-cetred hiv programmig for childre: family-cetred programmes i practice

40 Ecoomic stregtheig We have see that evidece supports the care ad protectio of childre withi families. It also recommeds family-stregtheig 42 activities to develop resiliece ad ecoomic security i families through fiacial ad social support. The aim of these itervetios is to provide sustaiable improvemet to families ecoomic situatios. This is so they are better able to access services ad support for their childre ad protect the family from ecoomic shocks associated with the impacts of HIV. There is growig evidece that ecoomic stregtheig through grats to families ca icrease educatioal attaimets ad the utritioal status of childre. 43 There are a rage of itervetios that ca help families cotiue to care for childre at home ad avoid family separatio ad the eed for istitutioal care. These iclude fiacial trasfers, pesios ad grats, savigs ad loas schemes, ad isurace. 44 Ideally this support should be provided by the state but i may coutries the ecoomic situatio meas that these itervetios are limited. Programmes providig support eve i the short term ca achieve log term health, social ad ecoomic beefits for families. Programmes should cosider: usig ecoomic stregtheig itervetios i families of all types, icludig those headed by childre or gradparets (the approach may eed to be adapted depedig o the family structure) supportig families with iformatio ad ecouragemet to lear about ad access supports offered by other orgaisatios or the govermet workig with commuity leaders or other commuity members to promote awareess of etitlemets ad help people access services lobbyig for atioal social protectio schemes, icludig child grats, widows pesios ad guarateed employmet or traiig programmes to help people get employmet advocatig for atioal social protectio to esure that the eeds of the most vulerable ad commoly excluded childre are met for example, childre of sex workers, people who use drugs, street ad workig childre supportig the creatio of laws ad policies that protect iheritace ad property owership, ad promote will-writig, particularly for wome ad childre recogisig the role of geder i relatio to access to supports ad the impact withi families ad commuities. 45 key resources Adato, M. ad Bassett, L. (2008), What is the potetial of cash trasfers to stregthe families affected by HIV ad AIDS? A review of the evidece o impacts ad key policy debates, JLICA. Devereaux S. ad Sabates- Wheeler, R. (2004), Trasformative social protectio, Workig Paper 232, Istitute of Developmet Studies. Hofma, S. et al. (2008), Salt, soap ad shoes for school: the impact of pesios o the lives of older people ad gradchildre i the KwaWazee project i Tazaia s Kagera regio, HelpAge Iteratioal. Holmes, R. et al. (2009), Geder vulerabilities, food price shocks ad social protectio resposes, ODI. Save the Childre (2007), Childre ad social protectio: towards a package that works. ODI/UNICEF (2009), Child poverty: a role for cash trasfers? West ad Cetral Africa. Roele, K. et al. (2011), Lessos from the Childre ad AIDS Regioal Iitiative (CARI): child- ad HIV-sesitive social protectio i Easter ad Souther Africa, Istitute of Developmet Studies. UNICEF (2009), Advacig child-sesitive social protectio, Joit Statemet UNICEF. Yabloski, J. (2009), Lastig beefits: the role of cash trasfers i tacklig child mortality, Save the Childre UK. 42. Richter, L. et al. (2010), Stregtheig families to support childre affected by HIV ad AIDS, AIDS Care 21(1): Adato, M. ad Basset, L. (2009), What is the potetial of cash trasfers to stregthe families affected by HIV ad AIDS? A review of the evidece o impacts ad key policy debates, Iteratioal Food Policy Research Istitute/JLICA. 44. Save the Childre (2009), Policy brief: family stregtheig ad support. 45. Brady, C. (2011), Walkig the talk: cash trasfers ad geder dyamics, Cocer Worldwide ad Oxfam GB. 38 family-cetred hiv programmig for childre: family-cetred programmes i practice

41 case study: shiftig from service delivery to likage ad referrals for govermet social welfare i idia CHAHA is a Global Fud programme implemeted by Alliace Idia i four states. The origial programme desig focused o developig a service package for childre aroud HIV testig ad treatmet, educatio ad utritioal support. It aimed to reach 64,000 childre. While the strategy of direct services was successful, it became clear that with growig umbers of childre affected by HIV i Idia, the project had to look at more scalable ad sustaiable resposes. These eeded to lik families rather tha idividual childre to support ad etitlemets, ad be capable of beig itegrated ito the atioal govermet respose. As a result, the programme has shifted its emphasis to establishig likages for families ad households to govermet social welfare support. This icludes widows pesios; ratio cards; utritioal services for uder-fives withi the itegrated child developmet services; icome geeratio support; ad guarateed employmet schemes. These types of support are ow offered i additio to their support aroud testig ad treatmet, ad access to educatio. Alliace Idia s experiece of referrals to medical services, like atiretroviral therapy ad PPTCT, provided valuable learig for buildig additioal likages ad referrals to govermet social welfare etitlemets. The project has ow developed a directory of essetial services ad govermet schemes. Families are supported to access these by the project s 350 outreach workers, who also help them with registratio ad grat collectio. Cotiued advocacy at atioal, state ad district levels esures a systematic lik with govermet departmets aroud these services ad support, addressig remaiig barriers such as stigma ad discrimiatio. The programme also advocates for ew schemes, ad works with commuities to geerate demad for services. 41,974 households have ow bee registered i CHAHA, with 99% of households liked to at least oe govermet scheme or etitlemet betwee 2009 ad The table below shows the umber of families affected by HIV registered i the programme who are accessig govermet etitlemets. Number of households accessig govermet etitlemets through CHAHA 18,000 16,922 10,000 14, ,000 10,198 8,000 6,000 4,000 2,000 2,376 4,208 4,373 6,466 0 Atodaya ratio card Housig scheme Medical isurace Widow pesio NREGS guarateed employmet Arogyasree health service waiver Households 39 family-cetred hiv programmig for childre: family-cetred programmes i practice

42 case study: coordiated commuity targetig withi a social protectio framework i zambia Alliace Zambia, with support from Irish Aid s Orphas ad Vulerable Childre Programme, started supportig six commuity-based orgaisatios i the Ndola ad Masaiti districts of the Copperbelt Provice, to coordiate ad itegrate with the Public Welfare Assistace Scheme (PWAS). PWAS is a govermet social protectio iitiative desiged to provide support to the poorest commuities ad those affected by HIV. Oe of its objectives is to esure that the most vulerable childre have access to basic eeds, icludig educatio, health care ad good utritio. The project aim is to stregthe govermet ad commuity support systems so that the most vulerable childre ad families have adequate livelihood security to meet their basic eeds, despite the impacts of HIV, AIDS ad poverty. Alliace Zambia coducted traiig workshops to itroduce the parters to the Public Welfare Assistace Scheme, icludig the beeficiary selectio matrix ad atioal child policy. Parters were also traied i social mappig, data collectio, documetatio, fiacial maagemet, moitorig ad report writig. The parters the worked with existig commuity welfare assistace committees i the target commuities to idetify ad select poor households carig for vulerable childre usig the beeficiary selectio matrix. This approach esured odiscrimiatory selectio that is commuity drive. Households were supported through trasfers of food ad materials ad various ecoomic stregtheig iitiatives such as cash grats, agricultural iputs ad small livestock. This support improved household food security, as well the utritioal status of childre. Some beeficiaries used the cash grat to start small household busiesses like buyig ad resellig food commodities. Supports were complemeted with psychosocial activities with childre ad families, ad traiig o paediatric HIV treatmet adherece to optimise treatmet success. I all, 670 households were supported with a comprehesive package. By the ed of the project i 2008, 1,535 childre were reached with support, ad 800 of them were supported to access primary ad secodary educatio. Parets ad guardias were supported with ecoomic stregtheig iitiatives, such as cash grats, agricultural iputs ad small livestock. This helped families to improve food security ad their childre s utritio. Parets ad carers were also traied i paediatric HIV treatmet adherece to esure treatmet success. A qualitative research study with parets foud that childre s sese of self-belief improved, alog with school attedace ad academic performace. By takig a itegrated family-cetred approach, the idividual eeds of childre were met alogside the eeds of their families. This approach makes families healthier ad stroger. The they are better able to care for, protect ad support their childre. Likig families to existig govermet welfare support meat the project avoided duplicatio of effort, makig it more sustaiable i the log term. Ad because the approach drew o existig welfare support, it meat that greater umbers of families could be reached. I have seve childre. We had may problems. We did ot have regular meals ad I was uable to sed my childre to school. I foud out about the scheme from a commuity welfare assistat committee member. They visited my house ad iterviewed me. I received a cash grat of 500,000 kwacha [approximately $100], which has eabled me to start up my ow busiess. I have also received food supplemets that have assisted me ad my childre greatly. With the moey I make from my busiess, I ca ow support my childre to atted school ad buy food for my family, so we are o loger hugry. To be able to look after my family ad be selfsufficiet has made me a much happier perso. 40 family-cetred hiv programmig for childre: family-cetred programmes i practice

43 case study: icreasig family icome with a savigs ad loas scheme i keya, igeria, ugada ad zambia Christia Aid s commuity-based orpha care programme is a five-year iitiative with a overall goal to improve the quality of life of at least 25,000 orphas ad vulerable childre i four Africa coutries. Households affected by HIV ad strugglig to support vulerable childre are give help to ear a sustaiable icome. The type of support varies, from providig tools, seeds ad fertilisers for gradparets to icrease their crop yield, to beig icluded i savigs ad loas schemes that help teeagers ad youg adults start up iovative small busiess schemes to icrease the family s icome. Workshops are held i commuities ad members are recruited ito savigs ad loas associatios, where they develop a pla of actio. They agree o a amout of moey to cotribute per week ad receive passbooks to record this i. At each meetig the group makes a decisio about which families ca be supported with a loa. Jaa Okoye, 24, cares for six childre. Jaa was 16 whe her parets died: I have received help from eighbours. They gave me food ad moey at the time. The eldest two boys ad the yougest sister were ot able to fiish school because we could ot afford it. I felt extremely sad. It was very paiful ad very difficult to care for them. Our parets used to look after us, but it has bee very difficult for me to make eough moey to care for them all properly. We do t have eough moey to buy food that is the biggest problem or medicies whe we are sick. We try to eat twice a day; sometimes we have eough to eat three times a day. It has bee a very big challege. I was able to secure a loa from the group, which I used to buy cookig oil. I buy it i bulk ad the sell it o i smaller amouts for a small profit. I took 4,000 Naira for the loa ad it takes me about three moths to pay it back. I ve leared so much sice I joied the group. I ve leared how to maage the family better, how to budget our fiaces ad how to talk about HIV. I ve see a real chage i them [the childre]. I the morigs they clea themselves, which they did t used to do. They tell me whe people say bad thigs about HIV, for example, ad they criticise them. I ve leared so much from joiig the group. I ve got a loa, but I ve also leared how to maage the family, how to ecoomise, how to talk about HIV ad about utritio. It has made my life a bit easier. The loa has helped me to ear a bit more icome it meas that I ca ear 600N more a moth. It helps with food ad a bit towards school fees. I hope to build up ad save more so that my brothers ad sisters ca have a better life. Food ad utritio Good utritio is essetial for the physical growth ad developmet of childre, ad the full developmet of their immue system. Childre s eed for good utritio starts before birth, ad utritioal support of HIV-positive wome is a importat itervetio. Certai groups of childre youg childre, childre livig with HIV, childre livig i poverty ad childre outside of family care are particularly vulerable to malutritio. Food security is also a issue for families affected by HIV where a paret or carer is ill ad uable to work. Adequate food ad good utritio is essetial for childre ad adults o atiretroviral therapy to support adherece ad esure that medicatio is effective. Family-cetred food ad utritio programmes aim to support log-term food security i homes rather tha provide food assistace to idividual childre. They also support family members to uderstad the importace of good utritio across differet age rages, together with the specific utritioal eeds of childre livig with HIV. Programmes should cosider: promotig the importace of utritio at the various stages of child developmet 41 family-cetred hiv programmig for childre: family-cetred programmes i practice

44 providig food ad utritioal supplemets malourished childre ad pregat wome may require supplemetary or therapeutic feedig ehacig skills i household agricultural ad livestock productio to icrease the amout of food harvested for the family social protectio measures such as cash trasfers to icrease access to food i the household ad reduce the eed for childre to work providig guidace to families o food preparatio ad hygiee likig utritio support programmes with agricultural support for icreased food security idetifyig ad targetig vulerable households, ad esurig equitable distributio of food, takig accout of household dyamics that affect patters of food distributio ad cosumptio such as the of age of childre, their geder ad the biological lik providig safety ets for vulerable childre through commuity grai baks, commuity gardes, livestock maagemet ad crop selectio, school feedig programmes, ad juior farm programmes. case study: improvig childre s health ad utritio i tazaia Lidi i Tazaia has oe of the highest rates of malutritio i the coutry, with a stutig rate of a estimated 53.5%. Malutritio is drive largely by poverty ad food isecurity, compouded by iadequate ifat ad youg child feedig practices. Most wome, especially i rural villages, are uable to idetify sigs of malutritio. Due to lack of access to utritioal ad childcare educatio, they do ot kow what they ca do to esure that their childre are gettig the utriets they eed to survive ad be healthy. key resources Family Health Iteratioal (2007), HIV, utritio ad food: a practical guide for techical staff ad cliicias. Gillespie, S. (2008), Poverty, food isecurity, HIV vulerability ad the impacts of AIDS i sub- Sahara Africa, JLICA. Iteratioal HIV/AIDS Alliace (2003), Buildig blocks: Africawide briefig otes. Health ad utritio. Reyolds, L. (2009), Nutritio i ART programmes, AIDS Map. Available at: Nutritio-i-ART-programmes/ page/ / UNAIDS (2008), HIV, food security ad utritio: policy brief. Available at: uaids.org/pub/maual/2008/ jc1515_policy_brief_utritio_ e.pdf Save the Childre s health programme i Tazaia is tacklig this through a commuity mobilisatio campaig. This is brigig together idividuals, groups ad orgaisatios to share iformatio ad carry out activities focused o improvig health ad the utritioal status of wome ad childre. Tupedae ( Let s love each other ) is oe of the groups formed to esure that all pregat wome ad childre i their area live ad grow healthily. Idividuals i the village, icludig me, came together after recogisig the importace of workig together to address the health problems i their area. Tupedae group members meet twice a moth to pla their commuity mobilisatio activities. These iclude visitig pregat wome ad ewbors i the village to provide utritioal ad health educatio ad support. Wome are taught about what it meas to eat a balaced diet ad why it is importat, especially durig pregacy. WHO HIV ad ifat feedig techical cosultatio held o behalf of the Iter-agecy Task Team (IATT) o prevetio of HIV ifectios i pregat wome, mothers ad their ifats, Geeva, October 25 27, Available at: mediacetre/ifatfeedigcosesusstatemet.pf.pdf Group members also pla their livelihood activities, icludig group allotmet ad rearig poultry to support the most vulerable families. Wome who have received support ad advice i the village grow vegetables ad grais ad keep chickes for eggs ad meat, providig valuable protei. Through commuity mobilisatio activities, messages about healthy utritio are reachig a broader sectio of the commuity. These are reiforcig health behaviours withi families, challegig myths aroud utritio, pregacy ad ifat feedig practices, ad providig greater support to food security activities across the commuity. I other settigs this has bee reiforced by likig the most vulerable families to supports such as therapeutic feedig for those who are malourished, ratio cards ad welfare supports such as cash trasfers or food vouchers. 42 family-cetred hiv programmig for childre: family-cetred programmes i practice

45 Educatio ad early childhood developmet Childre are ofte withdraw from educatio because of fiacial pressures withi the family. If childre are carers or headig households, they may fid it impossible to atted school as well as care for family members. Familycetred educatio eeds to take ito accout these pressures. Teachers ad other educatioal professioals have close cotact with childre, ad ca idetify problems they are experiecig withi the family. They also kow whe childre drop out of school. They are well placed to make referrals to commuity orgaisatios, agecies, services ad state supports that ca provide assistace to the child ad family. Programmes should cosider: recogisig that educatio services eed to uderstad the challeges faced by childre who have carig roles ad may out-of-school resposibilities, ad adapt to optimise their ability to access educatio promotig flexible school hours, ad offerig support with school materials ad school feedig to reduce the burde o the family advocatig school fee exemptios for the poorest families addressig maltreatmet ad exclusio by teachers ad other pupils through policies aroud the behaviour of staff ad pupils that promote protectio ad iclusio buildig family ad commuity trust ad value i educatio, makig school a priority for childre affected by HIV traiig educatio professioals to uderstad the role of schools i supportig families affected by HIV, by plaig ad adaptig services to meet their eeds. key resource Iteratioal HIV/AIDS Alliace (2003), Buildig blocks Asia. Educatio. The outreach worker i our suburb ecouraged us to come to the drop-i cetre for firstaid help ad stay for classes. The teacher there is great because she uderstads the life we have to live. case study: icreasig access to educatio for child-headed families i south africa Heartbeat is a South Africa orgaisatio, supported by Save the Childre, which works with child-headed households to icrease their access to educatio. The programme provides paid childcare workers, who visit families regularly ad esure that the childre are i school by egotiatig school fee waivers. The workers help childre to access govermet grats, ad they provide food. After-school cetres give the childre help with homework, life skills traiig ad idividual cousellig. They also provide peer support groups for childre headig households, ad opportuities for play, drama ad music. The childre ca access a social worker to support them with the challeges of beig youg carers. Heartbeat has bee supportig a towship commuity i Khutsog, where may adults migrate away for work. Here, support systems for childre have bee weakeed. Through a Heartbeat cetre, 196 childre i 27 child-headed households have ow bee supported with school fee waivers. Those ot receivig govermet social grats have bee provided with food ad materials. As a result, teachers have see improved attedace ad attaimet of these childre. Heartbeat has ow haded this project over to the local Khutsog commuity childcare forum ad is scalig up their work, providig traiig ad metorig to commuity- ad faith-based groups who are startig similar programmes with child-headed families. See Tolfree, D. (2006), A sese of belogig: case studies i positive care optios for childre, Save the Childre. Available at: docs/a_sese_of_belogig.pdf 43 family-cetred hiv programmig for childre: family-cetred programmes i practice

46 case study: joit school ad commuity itervetios i botswaa, swazilad, amibia ad south africa The Circles of Support iitiative was piloted i Botswaa, Namibia ad Swazilad ad is also ow operatig i South Africa. Its purpose is to eable vulerable childre to remai i or re-eter school ad fulfil their developmet potetial. The project has developed a approach to buildig the capacity of commuities to idetify vulerable childre. They the use existig resources to support vulerable families livig i the commuity, with the school as the cetral support structure. Usig participatory tools, the commuity- ad schoollevel facilitators are traied to kow childre s rights, to set up Circles of Support groups that iclude family ad commuity members, ad idetify childre i eed. The facilitators help with local-level itervetios, such as support with carig for youger sibligs or sick parets, to allow childre to atted school. They also help them to access grats or get fee exemptios from school, ad provide school uiforms ad statioery. Circles of Support groups are liked with fieldworkers who work directly with families, makig household visits ad assessmets. They explai the programme to families, ad talk to childre to idetify their eeds ad their problems. They also talk to carers about their household situatios, as well as the childre s eeds ad possible solutios. The Circles of Support moitor childre who are ot registered for or attedig school, ad home visits allow follow up with childre ad families to address barriers to attedace. They also eable referral to services for families i eed of emergecy support for abuse cases ad domestic violece. Through Circles of Support the most vulerable families ad childre are supported by their commuity ad school. Their progress is moitored ad they are liked to exteral support systems. The programme has eabled teachers to better uderstad vulerability ad the home situatios of pupils, ad support them to achieve their potetial. See Health & Developmet Africa, Circles of support for vulerable childre: a commuity ad schoolsbased multi-sectoral approach to meetig their eeds. Available at: Early childhood developmet programmes Critical developmets take place i early childhood that affect the health ad fuctioig of a child i later life (see Appedix 3). Good utritio, stimulatio, affectio ad love are key to helpig childre develop. Early childhood developmet programmes are desiged to optimise the child s developmet i this period through paretig educatio, promotig cogitive developmet ad commuicatio, ad utritioal support. These itervetios are delivered through support to families by home-based carers, social workers ad health workers. They are also offered i commuityad service-level settigs, which deliver paretig advice ad child developmet moitorig, ad provide childcare facilities. Programmes should cosider: targetig early childhood developmet programmes to all family members who have a carig role, ot just mothers assessig which family members sped most time with ifats recogisig that relatioships with a child are differet based o factors such as biological coectio, age ad family positio teachig family members, such as fathers, gradparets or sibligs, about the key factors ad stages i the developmet of a child ad how to provide the best care for the child desigig paret educatio iitiatives that improve the skills ad capacity of parets to care for ad commuicate with their childre, ad assistig with referrals to other services or to access etitlemets recogisig that paret educatio approaches may be especially importat for parets experiecig difficulties themselves for example, metal key resources AIDSTAR-Oe (2011), Early childhood developmet for orphas ad vulerable childre: key cosideratios techical brief, USAID/AIDSTAR-oe project. Berard va Leer: Early childhood matters. Available at: www. berardvaleer.org/eglish/ Home/Our-publicatios/ Browse_by_series.html?ps_ page=1&getseries=4 CARE USA (2006), Promotig early childhood developmet for OVC i resource costraied settigs: the 5x5 Model. CARE/ USAID/HACI. Iteratioal HIV/AIDS Alliace (2006), Buildig blocks: Africawide briefig otes. Youg childre ad HIV. 44 family-cetred hiv programmig for childre: family-cetred programmes i practice

47 health issues, drug use ad geder-based violece ad for carers takig o childre who are ot their ow. Paretig support is also crucial for idividuals who have had poor or dysfuctioal care i their ow childhood. case study: early childhood developmet i mozambique The Cosultative Group o Early Childhood Care ad Developmet is a global iter-agecy cosortium focussed o the developmet of youg childre. I respodig to the specific developmetal eeds of childre affected by HIV ad AIDS, the group has developed the Essetial Package a framework for addressig the eeds of very youg childre ad caregivers impacted by HIV ad AIDS. The package recogises that may childre are cared for by elderly relatives some of whom are sufferig from acute or chroic illess; ad may feel depressed ad isolated which ca affect their care givig. The Essetial Package provides guidelies ad tools for use at the household level, to help carers improve the quality of life ad log-term developmetal outcomes for childre by focussig o their eeds i the early years of life.the package highlights that there are differet types of caregivers withi the cotext of HIV ad targets messages accordigly. Save the Childre has carried out work to validate the package through its programme i Mozambique. Regular voluteer visits to families provide caregivers with tools ad support to develop the commuicatio skills, cogitive ad physical developmet of the childre they care for. Alice is a 55-year-old woma who has participated i the programme. She lives aloe takig care of seve childre ad gradchildre. The ucertaity about her future, ad that of her childre ad gradchildre, motivates Alice to provide the childre with a educatio. Although there is o ursery school earby, Alice makes a effort to stimulate learig at home. Through the home visits Alice has leart about the use of stories ad a visual referece guide to improve commuicatio ad iteractio with the youger childre. Alice sees the guide ot oly as a book of istructios for both herself ad the childre to follow, but also as a source of ispiratio; stimulatig creativity ad aspiratio. key resources Global Child Developmet Group (2011), Executive summary of Child developmet, Lacet series o early childhood developmet. Available at: www. globalchilddevelopmet.org Pece, A. ad Nsameag, B. (2008), A case for early childhood developmet i sub-sahara Africa, Workig Paper No. 51, Berard va Leer Foudatio. Zoll, M. (2008), Itegrated health care delivery systems for families ad childre impacted by HIV/ AIDS: four program case studies from Keya ad Rwada, JLICA. Early i the morig I feel very bad because I do t kow how I am goig to get the food for my brothers ad sisters. I feel the weight i my heart. I try ot to let them kow how bad I feel, it would just make them feel more sad. The relatioship that Alice has bee able to develop with her childre has bee stregtheed as a result of the voluteer s regular visits. The childre have bee icluded i the home visits with the voluteer, ad have become more egaged. Alice plas to sed the youger childre to primary school as soo as possible The voluteer visits also ecouraged Alice to esure the youger childre are vacciated ad reiforced the importace of utritio ad the role of vitamis i a childre s physical ad cogitive developmet The voluteer s visits have eabled Alice to feel less aloe ad therefore more supported i her efforts to raise the childre. I am also very happy because I have bee visited... I feel like I am stroger. See The essetial package: a age-appropriate framework for actio for youg childre ad caregivers affected by HIV ad AIDS. Available at: Rev%209%2026%20Web.pdf 45 family-cetred hiv programmig for childre: family-cetred programmes i practice

48 case study: paretig support i cambodia Korsag was fouded i 2004 to work with people who use drugs ad provide them with support ad harm reductio services. The i 2010, with support from UNICEF, Korsag established a drop-i cetre for wome who use drugs. The cetre, maaged by a woma who herself had previously used drugs, provides support to wome who use drugs, or parters of drug users, to access sexual ad reproductive health services, ateatal care, ad basic services for their childre. Forty wome ad 23 childre, most uder the age of two, atted daily, ad may more come for the weekly sexually trasmitted ifectio screeig ad sexual ad reproductive health services. Wome also have access to the Korsag doctor, ad referrals ad fiacial support for travellig to the cliic for ateatal care ad child health services. They are give educatio ad support i basic paretig skills, such as bathig, feedig ad maagig childhood illess, ad advice o how to iteract with their babies. Whe wome first came to the cetre they used to leave their babies for hours. Now they are supported to feed, bathe ad care for their babies, ad show how to deal with mior illesses. Most importatly, they lear how to commuicate with their babies. Now the wome o loger leave their babies aloe i the cetre but participate i play activities ad iformatio sessios, ad sped time iteractig with ad learig from other mothers. Parters are also ecouraged to participate i the cetre s activities aroud paretig ad childcare. Care ad protectio Protectig ad carig for childre is a primary resposibility of families. Most families treat the care ad protectio of their childre as a priority. However, the impact of HIV meas that some families may be uable to provide all the care ad protectio that is eeded. Their childre may the be at risk of eglect ad vulerable to exploitatio or abuse. As parets become seriously ill, the carig roles may be reversed, with childre takig icreasig resposibility for the care of their parets. The death of a paret, or both parets, creates a ew situatio i which the care ad protectio of the family s childre ca be seriously jeopardised. I may cases the exteded family may take o the carig role. But childre ca also face abadomet or iappropriate placemet ito a orphaage or other istitutioal settig. A family-cetred approach seeks to esure that childre are placed i a alterative family settig, with the support that esures the stability of the placemet ad provides for the childre s wellbeig. Commuity ivolvemet, ad the stregtheig of commuity systems to protect childre, is importat because atioal systems rarely reach far ito commuities ad services are ofte limited. Commuity-based child protectio mechaisms are still relatively utested ad they are ot systematically documeted. But the available evidece is positive i terms of protectio outcomes. Programmes should cosider: raisig awareess withi families ad commuities of childre s rights ad the risks of eglect ad abuse, i order to promote early detectio of problems ad provide support helpig families to protect the rights of their childre through birth certificates, access to services ad etitlemets, ad iheritace of lad or property from parets or other relatives supportig commuities ad the state i their duties of idetifyig ad assistig families facig challeges i their role as primary carers key resources Better care etwork toolkit (2011), Care plaig ad family reuificatio forms ad guidace. Available at: 110&TKcatID=12 Doyle, J. (2010), Misguided kidess: makig the right decisios for childre i emergecies, Save the Childre. Save the Childre (2010), Family stregtheig ad support: a policy brief. Wessells, M. (2009), What are we learig about commuity-based child protectio mechaisms? A iter-agecy review of the evidece from humaitaria ad developmet settigs, Save the Childre. UNICEF (2011), Policy ad programmig resource guide for child protectio systems stregtheig i sub-sahara Africa. Wulczy, F. et al. (2010), Adaptig a systems approach to child protectio: key cocepts ad cosideratios, UNICEF. 46 family-cetred hiv programmig for childre: family-cetred programmes i practice

49 buildig o existig commuity-based orgaisatios respose to childre ad embeddig protectio systems i existig commuity structures 46 emphasisig that child protectio systems should prevet family separatio, providig the kids of support that eable families uder stress to retai their childre ad maitai their paretig role advocatig for govermet policy that ca stregthe the protective eviromet aroud a child for example, paretig educatio, day care, respite care ad cousellig 47 placig childre i family settigs wherever possible, ad oly as a last ad temporary resort i istitutioal settigs 48 esurig that childre iformally placed i the care of their exteded family have the same degree of protectio as other childre, icludig the right to birth registratio ad iheritace assistig commuities to moitor ad support childre i both iformal ad formal care i order to idetify problems, offer support ad seek appropriate exteral services to help or itervee more directly to protect a child advocatig for alterative care services to be properly regulated ad moitored agaist a set of miimum stadards of quality care. This is a essetial step to prevet the uecessary separatio of childre from their families ad to esure that childre are well cared for i ay form of alterative care. key resources Log, S. (2010), Positively carig: esurig that positive choices ca be made about the care of childre affected by HIV, EveryChild. Olso, K. et. al. (2006), From faith to actio: stregtheig family ad commuity care optios for orphas ad vulerable childre i sub-sahara Africa, Firelight Foudatio. Oswald, E. (2009), Because we care: programmig guidace for childre deprived of paretal care, World Visio. case study: childcare forums i south africa As the umbers of HIV-affected childre rose i South Africa, may commuities developed local resposes to orphas ad vulerable childre. Almost 240,000 childre are ow gettig some help from commuitybased childcare forums. These local iformal etworks play a critical role i idetifyig orphas ad vulerable childre, providig them with psychosocial ad other support, ad referrig them to govermet services. The Maluti a Phofug muicipality is i the easter part of the Free State Provice. I 2003 the orphas ad vulerable childre task team from the muicipality, together with the Departmet of Social Developmet, Educatio ad Health ad Save the Childre, bega to establish childcare forums made up of 10 to 30 voluteers i all 34 wards of the muicipality. The aim was to provide much-eeded support ad services to vulerable childre i their families. First, the task team met with leaders of religious groups, pre-school teachers ad ward coucillors to seek support for the forums. The coucillors agreed to spearhead them withi their wards, ad the task team the traied at least five members of each forum for five days. Right from the start the childcare forums bega household surveys to idetify vulerable childre i their commuities. They help these childre to get birth certificates ad other idetity documets that are critical i South Africa to access govermet social grats, educatio ad other support. They also help families apply for social grats, ad distribute food parcels whe these are available. Members visit childre i child-headed households, ad egotiate with schools to waive fees ad allow the childre to atted. Some schools have also begu programmes to support vulerable childre, providig meals at school ad establishig clothig baks whereby better-off childre ca share clothes with those who do ot have eough. Childcare forums are ow established i most wards ad work closely with other local orgaisatios, icludig churches, childcare cetres, schools ad crèches. The childcare forum model has demostrated real potetial to assist vulerable childre ad their families. It ca help families to access social grats ad govermet services, while also directly providig other kids of support such as home visits, feedig schemes, educatio support ad recreatioal activities. As a meas of mobilisig commuity support to HIVaffected childre i their families, they have proved effective i bridgig the gap betwee families ad 46. Wessels, M. (2009), What are we learig about commuity-based child protectio mechaisms? A iteragecy review of the evidece from humaitaria ad developmet settigs, Save the Childre. 47. Save the Childre (2010), Policy brief: family stregtheig ad support. 48. Williamso, J. ad Greeberg, A. (2010), Families ot orphaages, Better Care Network Workig Paper family-cetred hiv programmig for childre: family-cetred programmes i practice

50 case study: childcare forums i south africa (cotiued) govermet services, ad i providig additioal family support services. likages with formal systems to mobilise resources ad facilitate effective referrals. The success of these ad similar commuity-based childcare ad protectio groups is dow to: commuity owership of the group s activities buildig o existig capacities ad assets support from formal ad o-formal leaders the participatio of childre themselves efforts to be iclusive ad to challege established social divisios However, they are ot without their limitatios ad challeges. These iclude the extet to which such groups ca be made resposible for maagig sesitive child protectio issues. They also iclude the risks resultig from iadequate traiig, ad the difficulty of sustaiig the ivolvemet of voluteers from the commuity. Emotioal ad psychological support Psychosocial support is ow a stadard compoet of comprehesive programmes for childre affected by HIV. However, it is ofte cofused with stadaloe itervetios directed at childre i respose to trauma, grief or bereavemet. For most childre it is the everyday love, care ad protectio that is importat, ot therapeutic itervetios from outside experts. The family is cetral i achievig the psychosocial wellbeig for so may childre, ad our approaches eed to stregthe childre s existig trusted relatioships through ecoomic, social ad material support to families. Some childre do face extreme psychological ad social impacts of HIV, ad psychosocial itervetios ca help childre ad families to deal with these. Commo psychological ad emotioal challeges faced by childre affected by HIV are grief ad bereavemet, comig to terms with their HIV status, fear about the future, ad isolatio as a result of stigma. They also have to cope with resposibility for sick family members ad a correspodig lack of attetio to their ow emotioal ad developmetal eeds. HIV disclosure or o-disclosure ca also be a source of stress ad psychological problems for youg people. May childre have already realised that they or their parets have HIV before this is officially disclosed to them. Adults withi families ca face similar challeges, ad relatioships may become difficult because of the stress experieced by family members. I these circumstaces, tesios ca lead to abuse ad family breakdow. Programmes should cosider: supportig families to maitai good relatioships ad deal with disclosure, bereavemet, stigma ad plaig their futures together usig memory work to brig together families affected by HIV i order to address psychosocial issues ad pla together for the future. Memory work is especially successful where the etire household, icludig childre, is ivolved 50 usig memory work to develop family history documetatio so childre have iformatio o their family tree ad relatives itegratig memory work ito the package of services to families affected by HIV The most appropriate ad sustaiable sources of psychosocial wellbeig for youg childre come from carig relatioships i the home, school ad commuity. 49 key resources Iteratioal HIV/AIDS Alliace ad Pact (2007), Uderstadig ad challegig HIV stigma: toolkit for actio. Module I: childre ad stigma. Richter, L. et al. (2006), Where the heart is: meetig the psychosocial eeds of youg childre i the cotext of HIV/ AIDS, Berard va Leer Foudatio. Williamso, J. ad Greeberg, A. (2010), Families ot orphaages, Better Care Network Workig Paper 1. Healthlik worldwide: Iteratioal Memory Project. Available at: uk/projects/hiv/imp_stories.html REPSSI, Memory work maual. Available at: idex.php?optio=com_cote t&view=article&id=75%3ame mory-work-maual-facilitatorsguide&catid=37%3afamilycommuity-support&itemid=1 49. Richter, L. et al. (2006), Where the heart is: meetig the psychosocial eeds of youg childre i the cotext of HIV/AIDS, Berard va Leer Foudatio. 50. Memory work: Learig from the Ugada experiece. Available at: ShowFile2.aspx?e= family-cetred hiv programmig for childre: family-cetred programmes i practice

51 workig with all family members to address their differet eeds ad supportig them to take decisios together recogisig the psychosocial eeds of all the family, icludig carers, ad providig them with practical ad emotioal support i order to be more effective. case study: maistreamig psychosocial support ito services to families The Regioal Psychosocial Support Iitiative of Souther Africa (REPSSI) is a capacity-buildig orgaisatio workig across Africa. It advocates for child-related services, programmes ad policies that recogise the holistic eeds ad rights of childre. It also itegrates psychosocial support ito programmes. REPSSI believes that the psychosocial eeds of childre affected by HIV are best supported ad sustaied by everyday cotact ad iteractios with parets, carers ad commuities. REPSSI has developed a umber of tools withi services provided to childre ad their families that support families ad carers to work with childre. Weavig Hope for Our Childre is a tool that has bee developed for commuity-level health providers such as home-based carers. It helps them to fid ways of supportig childre ad addressig their psychosocial ad health eeds as they are providig health services to families ad commuities. There are also tools for families to use with childre, such as The Talkig Book, which supports carers i disclosig their HIV status to childre. REPSSI has produced tracig books for family members to record their physical ad emotioal resposes to HIV ifectio that ca be shared together. I additio, the Tree of Life provides safe spaces for childre to deal with their feeligs about loss ad bereavemet. REPSSI believes strogly that oly a few childre are i eed of idividual specialised therapeutic services for extreme trauma. I their experiece, psychosocial support is best supported through maistreamed itervetios that are delivered through ad with families. See case study: psychosocial support for caregivers i south africa Whe we talk about psychosocial wellbeig we ofte thik oly of the childre s eeds. But the carers of childre affected by HIV have their ow eeds, ad ofte experiece stress, fatigue, guilt, fear ad grief. Whether youg or old, beig resposible for the care ad protectio of others ca make it harder to be ope about feeligs. The five-year Thogomelo Caregiver Support ad Child Protectio programme has produced skills developmet programmes ad materials to support the carers of vulerable childre across all ie provices of South Africa. The project works i collaboratio with the South Africa Departmet of Social Developmet, ad is implemeted i partership with PATH, Health ad Developmet Africa ad the Alliace. At least 500 learers are traied aually. The Thogomelo project aims to help carers reduce their isolatio ad icrease their resiliece. It is developig resources ad activities to help carers ad their supervisors overcome the challeges they face durig their everyday work. The project s belief is that a well-cared-for caregiver is a effective caregiver. Usig activity-based, participatory learig to accout for the carers differet backgrouds, the programme also ivolves classroom ad experietial learig ad field-work. The Thogomelo project is providig comprehesive guidace o caregivers wellbeig. This icludes stregtheig relatioships; self-care; dealig with stress; carig for caregivers; buildig a carig commuity; accessig ad mobilisig resources; respodig to child abuse ad eglect; uderstadig child developmet; maitaiig resiliece; ad icreasig HIV ad AIDS literacy. The Thogomelo team is also stregtheig the capacity of commuity carers to idetify ad respod to violatios i child protectio withi families. This is helpig to reduce the axiety they experiece whe cofroted with child abuse, eglect or exploitatio. Commuity owership is essetial to keepig childre safe. That is why Thogomelo is workig closely with provicial, district ad commuity stakeholders such as commuity care forums, commuity leaders, police officers, commuity health workers, ad Departmet of Social Developmet officials. 49 family-cetred hiv programmig for childre: family-cetred programmes i practice

52 5 How do we make a family-cetred approach work i our orgaisatios? I this chapter: How do we adapt our programmes to a family-cetred approach? 50 family-cetred hiv programmig for childre

53 We have looked at the beefits of applyig a family-cetred approach ad some examples of how they ca be applied i programmes for childre affected by HIV. The ext step is to thik about how to put this ito actio i our orgaisatios. It may be that some of our curret programmes ca be adapted without major adjustmets. Perhaps as we pla ew programmes ad develop ew proposals for fudig we will adopt a family-cetred approach, makig sigificat adjustmets to our curret programme desig. Before movig ahead, it is useful to thik about the preparatios we may eed to make withi our orgaisatio ad the challeges we may face. Applyig a familycetred approach requires a chage i the way we thik ad the way we work. We will eed to cosider some of the followig issues. how do we adapt our programmes to a family-cetred approach? buildig capacity coordiatio ad etworkig workig with commuity groups limited services o the groud lack of child- ad adolescetfriedly areas Adaptig programmes to take a family-cetred approach is likely to diversify programme activities ad hece the skills eeded by staff to deliver them. For example, home-based care programmes curretly focusig o the eeds of adults livig with HIV could be broadeed to assess ad meet the eeds of childre withi the household. I order to do this, the carers would eed to be traied so that they are cofidet commuicatig with childre, aware of child protectio issues ad uderstad the services to which the family should be referred. Similarly, programmes that have provided material support through payig school fees or providig school materials may be adjusted to provide a savigs scheme or icome geeratio cooperative to provide sustaiable family icome. Agai, staff will eed additioal skills to implemet these programmes successfully. The workload of key staff such as voluteer health workers will also eed to be maaged so that if they expad their role to care for families, rather tha just adults, they may eed to support fewer families or cover a smaller geographic area. Few programmes ca deliver the full rage of services ad supports that a family may eed. So a strog focus o referrals ad likages to other service providers is eeded. This will require assessig available services i the commuities where we are workig, developig relatioships with other service providers, ad establishig meas of referrig families betwee orgaisatios. We also have a resposibility to assess the quality of the services available before promotig them or makig referrals, ad a meas of moitorig the effectiveess of referrals. We may decide to itroduce a programme, or programme compoet, that ivolves usig commuity groups, etworks of people livig with HIV, ad commuity child protectio committees to mobilise ad support families to access resources from govermet programmes. Family-cetred approaches deped o a rage of services ad resources beig available at differet levels. These iclude atioal social protectio schemes, or access to health services providig key compoets of family-cetred care, such as ateatal care ad obstetrics, early ifat diagosis, early childhood developmet ad paediatric atiretroviral therapy. I cotexts where few of these exist, it is still possible to esure that family likages make the best use ad uptake of those that are available, or we ca advocate for these services at local or atioal level. May health facilities do ot have areas that are attractive ad user-friedly for adolescets ad childre, or for seeig families together. However, with a little imagiatio it may be possible to make chages with limited resources or reorgaise available space to achieve a more user-friedly eviromet. 51 family-cetred hiv programmig for childre: how do we make a family-cetred approach work i our orgaisatios?

54 how do we adapt our programmes to a family-cetred approach? limited documetatio of approaches i differet cotexts moitorig ad evaluatio door fudig structures There is curretly limited documetatio to support promotig ad implemetig family-cetred programmes i differet coutries ad cotexts. There are few established programme desigs ad tools that ca be easily trasferred from other orgaisatios or programmes. This meas that our orgaisatios will eed to take the priciples of family-cetred workig ad base our programmes o these, together with a assessmet of our particular cotext. We should also documet our experiece of family-cetred workig so that it ca be shared with others ad help develop good practice. I order to moitor the impact ad effectiveess of family-cetred programmes, we will eed to develop ad adapt tools so they measure factors such as ecoomic security of households, household utritioal levels, attedace ad attaimet i school of all childre, ad the wellbeig of all family members. Door fudig is ofte allocated separately for programmes addressig the eeds of adults ad childre. Orgaisatios eed to discuss with the doors the value of a itegrated respose ad egotiate to use fuds more flexibly. Programmes eed to geerate evidece of value for moey ad effectiveess of this approach for these discussios. I the short term, if our orgaisatio oly works with childre, we may cosider applyig for grats that will eable us to work more flexibly with families. There are so may thigs to cosider ad it ca seem overwhelmig at first but use this guide to help you make the first steps i promotig a familycetered approach. 52 family-cetred hiv programmig for childre: how do we make a family-cetred approach work i our orgaisatios?

55 6 How do we add quality to our programmes? I this chapter: What are the cross-cuttig priciples of family-cetred care? How do we target services ad make sure they reach those who eed them? 53 family-cetred hiv programmig for childre

56 What are the cross-cuttig priciples of familycetred care? This chapter outlies cross cuttig priciples ad guidace we should apply whe plaig family-cetred care ad services for childre. May of these are importat priciples for all programmes targetig childre. Five of these are based o the Alliace programmig stadards for childre that are refereced i Appedix 1. Liks ad refereces are provided for each priciple so that we ca lear more about each topic ad access more iformatio about how practically to apply these i our programmes. The table ca be used as checklist to help us esure we apply all the priciples. priciple childre s rights stadard 2 child protectio stadard 2 what is it ad why is it importat i family-cetred care Childre s rights were laid out i the UN Covetio o the Rights of the Child, which has bee agreed by 194 coutries. It icludes a child s right to: life, survival ad developmet be treated equally ad be free from discrimiatio. participate i activities ad decisios that affect them. All actios should be based o the best iterests of the child, i particular the right of a child to participate fully i family life ad to be reuited with parets if separated. Childre have the right to be protected from abuse, exploitatio ad eglect. Providig family-stregtheig support ca reduce stresses withi the family ad prevet abuse, exploitatio ad eglect. Meas of detectig child abuse ad eglect are eeded withi commuities. Alterative care eeds to be made available whe childre are abused. refereces ad resources Child Rights Iformatio Network: Save the Childre (2007), Gettig it right for childre: a practitioers guide to child rights programmig. Uited Natios Geeral Assembly (1990), Covetio o the rights of the child, Office of the Uited Natios High Commissioer for Huma Rights. Africa Uio (1999), Africa charter o the rights ad welfare of the child. SAARC/UNICEF (2009), Regioal strategic framework for protectio, care ad support of childre affected by HIV/AIDS. Wessells, M. (2009), What are we learig about commuity-based child protectio mechaisms? A iter-agecy review of the evidece from humaitaria ad developmet settigs, Save the Childre. Wulczy, F. et al. (2009), Adaptig a systems approach to child protectio: key cocepts ad cosideratios, UNICEF, UNHCR, Save the Childre. UNICEF (2007), Ehaced protectio for childre affected by AIDS: a compaio paper to the framework for the protectio, care ad support of orphas ad vulerable childre livig i a world with HIV ad AIDS. Jackso, E. ad Werham, M. (2005), Child protectio policies ad procedures toolkit: how to create a child-safe orgaisatio, ChildHope UK. Save the Childre (2008), A commo resposibility: the role of commuity-based child protectio groups i protectig childre from sexual abuse ad exploitatio. Sheaha, F. (2009), The first lie of protectio: commuity-based approaches to promote childre s rights i emergecies i Africa, Save the Childre Swede 54 family-cetred hiv programmig for childre: how do we add quality to our programmes?

57 priciple geder sesitive childre s participatio stadard 3 targetig based o vulerability ad ot hiv or orpha status stadard 3 itegratio with atioal resposes ad plas what is it ad why is it importat i family-cetred care Boys ad girls should have equal rights ad opportuities. Programmes ad policies should promote ad, as far as possible, esure equal opportuities ad resources for boys ad girls, ad me ad wome. They should uderstad geder orms ad recogise whe boys are more vulerable tha girls ad vice versa. Programmes should also cosider relatioships betwee me ad wome, boys ad girls, ad how these ca affect programmes i positive ad egative ways. Participatio meas that childre are actively ivolved i decisios ad plas that affect their lives. Adults may eed to be sesitised, as child participatio ca be see to challege traditioal roles of adults ad childre, ad power hierarchies. Whe desigig programmes ad policy, childre eed to participate at all stages of the project cycle. Methods to eable childre to participate eed to take ito accout age, literacy ad other capacities of the child. Targetig families based o HIV status aloe causes stigma ad discrimiatio, ad ca disrupt relatioships i commuities. Evidece shows that targetig based o extreme poverty effectively reaches families affected by HIV, ad that orphahood is ot a good idicator of vulerability. New research o developig a idicator related to household wealth is more relevat for idetifyig who is vulerable Where feasible, policy ad programmes should be plaed ad delivered to ehace ad coordiate with atioal plas ad policy. JLICA foud that successful programmes were ofte delivered by may parters but were govermet led. Programmes should also have strog liks with govermet agecies at local level. refereces ad resources Iteratioal HIV/AIDS Alliace (2007), Keep the best, chage the rest: participatory tools for workig with commuities o geder ad sexuality. Strategies for Hope (1995), Steppig stoes: a traiig package i HIV/AIDS, commuicatio ad relatioship skills. Save the Childre (1999), Save the Childre s policy o geder equality. Promudo/UNFPA/MeEgage (2009), Egagig me ad boys i geder equality ad health: a global toolkit for actio. Bhaa, D. et al. (2006), Youg childre, HIV/ AIDS ad geder: a summary review, Berard va Leer Foudatio. Save the Childre (2005), Practice stadards i childre s participatio. Iter-Agecy Workig Group o Childre s Participatio (2007), Childre s participatio i decisio makig: why do it, whe to do it, how to do it. Iter-Agecy Workig Group o Childre s Participatio (2007), Miimum stadards for cosultig with childre. Save the Childre (2010), Child carers: childled research with childre who are carers. Case studies from Agola, Nigeria, Ugada ad Zimbabwe. UNICEF (2006), Child ad youth participatio resource guide, UNICEF East Asia ad Pacific Regioal Office. Akwara, P.A. et al. (2010), Who is the vulerable child? Usig survey data to idetify childre at risk i the era of HIV ad AIDS, AIDS Care 22(9): Egle, P. (2009), Natioal plas of actio for orphas ad vulerable childre i sub- Sahara Africa: where are the yougest childre? Berard va Leer Foudatio. Save the Childre (2003), Natioal plas of actio for childre: summary guide for govermets, Save the Childre Alliace. 55 family-cetred hiv programmig for childre: how do we add quality to our programmes?

58 How do we target services ad make sure they reach those who eed them? I additio to these cross-cuttig priciples, the quality of our programmes will deped o how far they meet the eeds of the childre ad families who eed services the most. Quality also depeds o programmes beig delivered i a way that makes them accessible to the people who eed them. Esurig services reach those most i eed Margialised groups are ofte ot reached by programmes or are excluded from services. Programmes ad policy should recogise the diversity of families ad esure that programmes are reachig ad icludig the most margialised childre ad families. These may be the childre of sex workers, drug users, trasgeder people, me who have sex with me, migrat childre, street ad workig childre, childre i istitutios, ad childre i coflict with the law. Esurig services are accessible There are may barriers that prevet childre ad families accessig services. We eed to assess the barriers that particular groups face ad look at strategies to make services more attractive or easily available to all. Commo barriers that relate to the way services are provided are: stigma ad discrimiatio fiacial costs of trasport or service charges registratio costs pharmacy costs time ad trasport costs of services i differet locatios for adults ad childre legthy travel to health services. key resources Beard J. et al. (2010), Childre of female sex workers ad drug users: a review of vulerability, resiliece ad family-cetred models of care, Joural of the Iteratioal AIDS Society 13(2). Ope Society Istitute (2009), Wome, harm reductio, ad HIV: key fidigs from Azerbaija, Georgia, Kyrgyzsta, Russia, ad Ukraie. Assessmet i Actio Series, Ope Society Istitute. Presetatios from Coalitio for Childre Affected by AIDS (CCABA) meetig o family cetered care for the most margialised families. Available at: resources_geeva.html Geder orms ca also act as a barrier to accessig services. Assessig ad addressig the barriers that limit the ability or willigess of boys ad girls ad me ad wome to access services should be a key part of programme desig. I may areas, particularly rural areas, key services may ot be available or of poor quality. Where this is the case, advocatig for essetial services to be made available to the whole populatio should be a key policy iitiative. Whe I fell sick the cliic refused to admit me with my daughter. I do t kow who my daughter s father is... there was o oe to look after her. She is o more I will ever go for treatmet. I am ot iterested. Female ijectig drug user (26) Oiam, A. (2008), Explorig the liks betwee drug use ad sexual vulerability amog youg female ijectig drug users i Maipur, Health ad Populatio Iovatio Fellowship Workig Paper 6, New Delhi: Populatio Coucil. 56 family-cetred hiv programmig for childre: how do we add quality to our programmes?

59 Providig services i a itegrated way JLICA s aalysis idicated that services are most effective whe delivered i a itegrated way. This meas providig multiple services, such as health, utritio, early childhood developmet ad ecoomic support, to families together i oe place. Although i Chapter 4 we describe the itervetios by sector, may of these services ad supports impact o each other ad ideally should be delivered together. Esurig referrals ad likages betwee services While recogisig the ideal of providig services i a itegrated way from oe cetre, this may ot always be possible especially i the short term. The differet services eeded by childre ad families affected by HIV are ofte provided by a rage of orgaisatios. These may iclude the govermet ad iteratioal o-govermetal or commuity-based orgaisatios. For example, the govermet may provide treatmet, a o-govermetal orgaisatio may give utritioal support, ad a commuity-based orgaisatio may offer homebased care or psychosocial support. We eed to kow what other services are available i our area, ad establish ad maitai good mechaisms for referral betwee services. Govermet departmets at a district level should play a role i collatig the service iformatio by provider ad service withi a geographic locatio. Withi health service provisio, differet parts of the service may be offered i differet cetres or parts of a hospital. Smooth referral from oe service to aother is essetial to esurig that childre ad families receive all the services they eed, ad to prevetig loss to follow up. For example, wome who have received PPTCT should be referred to materal, eoatal ad child health services, or to adult treatmet services as eeded. Older childre receivig paediatric atiretroviral services may eed referral for sexual ad reproductive health, educatio or social welfare services. Smooth referral ca be facilitated by commuity members actig as outreach workers or expert patiets. They are aware of the rage of services available ad ca help families avigate services. They ca help with issues such as lack of iformatio or kowledge of services. They ca also provide support for people who are worried about accessig services, whether through lack of experiece or fear of stigma or discrimiatio. We eed to fid ways of esurig we are reachig those families who are too ofte missed i our programmes 57 family-cetred hiv programmig for childre: how do we add quality to our programmes?

60 7 Summary As we work with childre affected by HIV, we should be askig what is the situatio of all the family members? how ca all the family members carig for the child be supported? how ca the family structure be stregtheed? who is the child s family? who supports us whe there is o family? what we thik! 58 family-cetred hiv programmig for childre

61 Programmig i the cotext of HIV has chaged. The focus o idividuals ad their access to treatmet has achieved a great deal ad people are livig loger. Now their ogoig eeds are aroud their families, livelihoods ad huma rights. Family-cetred programmig offers a opportuity to focus o stregtheig the family uit for more sustaiable developmet. There is ow strog iteratioal guidace o family-cetred programmig, based o growig evidece. But so far, much of the discussio aroud familycetred approaches has happeed at the iteratioal level. A importat step i the process ow is to traslate learig ad recommedatios to the atioal ad local level. We hope this guide will provide programmers with the evidece, examples ad ideas to begi this process, ad to support advocacy for familycetred programmig withi our coutries. The guide has looked at the beefits for families ad childre of a family-cetred approach to workig with childre affected by HIV. Usig a family-cetred approach, we cosider the family i every itervetio with childre, recogisig that supportig the family is oe of the most effective meas of esurig the best possible quality of life for the child. As we work with childre affected by HIV, we should be askig: Where is the child s family? Who are the family members? What is their situatio? What ca be doe to stregthe the family structure ad esure its optimal health ad fuctioig? Throughout the guide we have looked at the family-cetred approach through the les of carig for the child. However, a family-cetred approach ca also be applied from the perspective of workig with adults. Whe we work with adults we should also be askig: Do the adults care for childre? Are there ay other family members? Where are they? What is their situatio? Programmes focusig o deliverig support or treatmet to adults ca be used as a etry poit to cosider how itervetios ca reach childre ad improve outcomes for families as a whole. We eed to recogise i all HIV programmes that a idividual respose is limited i what it ca achieve. Uderstadig the cotexts i which people live, the social relatios ad etworks they rely o, ad esurig that these families are supported, should also achieve better outcomes for HIV programmes geerally. Implemetig a family-cetred approach withi our HIV programmig is a importat goal. We ca improve the health ad wellbeig of vulerable childre by improvig the health ad wellbeig of their families. A family-cetred approach ca help us to achieve log-term positive impacts for childre i terms of their health, educatio ad social developmet by ackowledgig the iter-related ature of family relatioships ad their effects o childre s health ad wellbeig. Key challeges remai for orgaisatios i idetifyig ad reachig the most margialised families ad esurig they are icluded i family-cetred programmig. Implemetig family-cetred programmes ad policy requires: 59 family-cetred hiv programmig for childre: summary

62 iovative parterships betwee orgaisatios ad coordiatio of services to maximise the opportuities to get a broad rage of services to all families programmers to thik about childre withi a etwork of social relatios ad diverse costructios of family, ad develop ew ways of workig that take a case maagemet approach lookig at child vulerability i the cotext of the family ad ot just at orphas measurig family capacity ad resiliece i carig for vulerable childre stregtheig health, social welfare ad commuity systems for safeguardig childre reallocatig resources ad traiig health workers, teachers ad other workers who care for childre developig the evidece base to demostrate the positive impacts of trackig child wellbeig through a family-cetred les a itegrated ad comprehesive programme of ivestmet to develop a full rage of services, such as ateatal care ad obstetrics, early ifat diagosis, early childhood developmet programmes, ad paediatric atiretroviral therapy detailed cost beefit aalysis of family-cetred approaches esurig that atioal social protectio programmes reach the most vulerable ad that they are HIV ad child sesitive. We hope this guide ca be a helpful ogoig referece as we desig ad implemet our programmes for childre affected by HIV i order to support the best possible outcomes for childre. 60 family-cetred hiv programmig for childre: summary

63 Appedix 1 HIV programmig stadards stadard descriptio implemetatio actios markers of progress A stadard is a agreed-upo level or bechmark of quality. It is measurable ad evidece-based Explaatio of the stadard ad evidece Suggestios for actios to implemet the stadard stadard 1 Our orgaisatio supports childre ad their families based o defied vulerabilities, ad avoids labels such as OVC ad CABA uless they are clearly defied Programmes are most effective whe they target childre ad their families based o a assessmet of vulerability ad ot based o orpha status. We uderstad that orphahood aloe is ot a effective idicator of vulerability ad that targetig ad labellig childre with terms such as OVC ad CABA ca be iaccurate ad cofusig as well as stigmatisig. (See: Sherr et al (2008), A systematic review o the meaig of the cocept AIDS orpha : cofusio over defiitios ad implicatios for care.) Whe we talk about the childre withi our programmes we do ot label them or group them based o their orpha status, we treat them with digity ad respect ad as people. (See: Johso, J. (2008), Who is the vulerable child? Usig data from DHS ad MICS to idetify childre at risk i the era of HIV ad AIDS.) Coduct assessmets to uderstad the vulerabilities of childre ad families i the programme target area. Defie the multiple vulerabilities of childre targeted i programme plas. This could iclude childre livig with HIV, childre i households affected by HIV, childre who have lost oe or both parets, childre vulerable to HIV ifectio from livig o the streets, ad childre livig outside family care. Use the cocepts of childre or childre ad families to defie this target group whe collectig data or reportig, ot CABA, or OVCs reached. materials ad resources Programme plas cotai clear defiitios of the target group of childre ad their specific vulerabilities to HIV withi their cotext. Publicatios ad reports do ot use acroyms uless they are accompaied by a detailed defiitio. Staff do ot use terms ad labels for childre such as OVC ad CABA but describe the specific vulerabilities of the childre ad their families withi the programme. Joit Learig Iitiative o Childre ad HIV/AIDS (2009), Home truths: facig the facts o childre, AIDS, ad poverty. 61 family-cetred hiv programmig for childre

64 stadard descriptio implemetatio actios markers of progress stadard 2 Our orgaisatio respects ad promotes the rights of childre ad their protectio from abuse, exploitatio ad eglect The rights of childre should be respected ad promoted. Childre should be protected from violece, abuse, exploitatio ad eglect at all times. The best iterests of the child must be a primary cosideratio for actios affectig childre. Through our child protectio measures we aim to stregthe childre s ow ability to protect themselves. We stregthe families ability to protect childre by prologig the lives of parets ad eablig them to access basic services. We egage families ad commuities i idetifyig harmful practices that put childre at risk, makig them aware of policies ad processes that help i prevetig abuse, exploitatio ad eglect, ad providig strategies to respodig to a violatio of a child s rights. We promote the importace of creatig a supportive eviromet through legislatio that gives childre ad their families legal support to address child protectio violatios. Implemet a child protectio policy, ad display the policy, develop a staff code of coduct, share guidace o childre s participatio, ad idetify focal people i the orgaisatio. Trai the staff of childre s programmes o childre s rights, the child protectio policy, staff coduct ad o recogisig sigs of abuse, eglect ad exploitatio. Promote commuity awareess ad support of child rights, ad the rejectio of ay form of discrimiatio, abuse, exploitatio, or eglect of childre. Esure childre ad their carers are made aware of policies, systems, procedures ad support services that are available to protect childre. Formulate a list of materials ad services that ca be easily accessed should childre ad families be referred for further support, such as social work, cousellig, ad the police. Promote ad advocate for legislatio that protects childre at atioal ad iteratioal level icludig child rights act, childre s acts, ad child protectio policies. A child protectio policy focal perso is idetified ad is moitorig policy implemetatio activities. The policy is available i local laguages ad a child-friedly versio is shared with parters, ad doors. There is a explicit procedure for reportig icidets available i a rage of laguages. Staff have a list of service providers ad a referral flow chart available to them to support the policy. Staff have received traiig ad ca demostrate a uderstadig of childre s rights ad protectio, ad are clear about expectatios of their coduct. There is a clear process for sharig the policy with childre ad families withi the programme. As a result, they kow how to take actio to highlight protectio violatios. materials ad resources Childre s Rights Iformatio Network. Jackso, E., Werham, M. ad Child Hope (2005), Child protectio policies ad procedures toolkit: How to create a child-safe orgaisatio, Cosortium for Street Childre. Keepig Childre Safe Coalitio. Save the Childre (2007), Gettig it right for childre: a practitioers guide to child rights programmig. Save the Childre (2008), A commo resposibility: the role of commuity-based child protectio groups i protectig childre from sexual abuse ad exploitatio. UNICEF (2007), Ehaced protectio for childre affected by AIDS: a compaio paper to the framework for the protectio, care ad support of orphas ad vulerable childre livig i a world with HIV ad AIDS. Uited Natios Geeral Assembly (1990), Covetio o the rights of the child, Office of the High Commissioer for Huma Rights. 62 family-cetred hiv programmig for childre

65 stadard descriptio implemetatio actios markers of progress stadard 3 Our orgaisatio promotes childre s participatio i processes that are iclusive ad age appropriate Participatio is a basic huma right that childre are etitled to. Participatio refers to the active ivolvemet of childre i the decisios, processes, programmes ad policies that affect their lives. I order to respod to the eeds of childre effectively we uderstad that programmes must ivolve the participatio of childre ad their families i all stages of the project cycle. Childre are the oly oes who ca describe issues from their perspective. Participatio of childre i our programmes aims to build their self-esteem ad cofidece. It allows them to develop importat commuicatio skills ad it also raises awareess of the eeds of childre to the broader commuity. Actively ivolve childre i developig ad desigig itervetios ad i the evaluatio ad review of programmes that address their rights ad eeds. Esure that the activities they are ivolved i are tailored to their age group. Esure processes empower childre to make decisios about their care ad the desig of services that are for them. Support families ad commuities to uderstad the value of childre s participatio ad provide opportuities for them to explore the processes withi their ow cotext. Cosider carefully who withi a family takes part ad demostrate awareess of the possible impact o families, other sibligs ad excluded childre. Staff demostrate a uderstadig of the value ad importace of childre s participatio. Orgaisatios ca demostrate childre are participatig i programme developmet ad implemetatio ad are ifluecig programme desig ad evaluatio. Programme plas iclude clear processes for the participatio of childre that cosider the ifluece of geder ad power i the selectio ad iclusio of childre. Programme documetatio demostrates that the views of both boys ad girls are heard ad used withi the programme. materials ad resources Iter-Agecy Workig Group o Childre s Participatio (2007), Childre s participatio i decisio makig: why do it, whe to do it, how to do it. Iteratioal HIV/AIDS Alliace (2004), A parrot o your shoulder: a guide for people startig to work with orphas ad vulerable childre. Lasdow, G. (2001), Promotig childre s participatio i democratic decisio-makig, UNICEF. Save the Childre (2005), Practice stadards i childre s participatio. 63 family-cetred hiv programmig for childre

66 stadard descriptio implemetatio actios markers of progress stadard 4 Our orgaisatio promotes ad/ or provides programmes for childre that are HIV sesitive ot HIV specific Evidece demostrates that itervetios targetig the poorest ad most vulerable families usig targetig criteria such as extreme poverty will effectively reach those affected by HIV, ad at the same time will ot stigmatize ad label. We uderstad that whe targetig childre ad families, selectig oly beeficiaries directly affected by HIV ca result i resetmet amog other equally poor families, ad ca icrease stigma ad udermie the effectiveess of programmes. (See: UNICEF (2007), Impact of social trasfers o childre affected by HIV ad AIDS.) Assess the factors that make childre vulerable to HIV ifectio ad the impacts of HIV withi a specific cotext. Programmes target childre accordig to agreed criteria aroud vulerability ot orpha status. materials ad resources A assessmet has bee completed ad the factors that make childre vulerable withi the programme cotext have bee idetified. A programme pla has bee developed to address factors idetified i the assessmet. Direct liks ca be see. Criteria for targetig are explicit ad are based o the vulerability of childre ad their families, ot the HIV status of child or family members aloe. Joit Learig Iitiative o Childre ad HIV/AIDS (2009), Home truths: facig the facts o childre, AIDS, ad poverty. 64 family-cetred hiv programmig for childre

67 stadard descriptio implemetatio actios markers of progress stadard 5 Our orgaisatio has policies ad programmes to address stigma ad discrimiatio that act as a barrier to childre ad families accessig programmes Childre affected by HIV, especially those livig with HIV ad childre who are highly margialised, are ofte stigmatised ad discrimiated agaist ad excluded from programmes ad services. We address stigma at the family ad commuity level so that childre ca exercise their rights to support ad services. We positively promote access to services for all childre through the creatio of policies o school admissio, birth registratio, ad decrimialisatio of sex work, for example. Coduct participatory learig sessios to eable childre ad families to uderstad their rights ad respod to discrimiatio ad its cosequeces. Moitor discrimiatio ad respod to the fidigs. Trai ad mobilise commuities to esure commuity members ad service providers uderstad ad address stigma ad discrimiatio. Foster parterships with huma rights istitutios, legal services ad uios to promote ad protect the rights of childre ad their families, for example to ecourage birth registratios. A assessmet of the factors that lead to stigmatisatio of childre ad their families has bee udertake. Guides ad tools for iteractive sessios o stigma ad discrimiatio are available for programme staff to use. Staff are traied to facilitate learig sessios with childre ad families o relevat topics such as developig child-friedly services, self-esteem, ad advocacy skills for childre. A stigma ad discrimiatio moitorig format is available ad up-to-date. Coduct advocacy ad lobbyig activities o the rights of margialised ad vulerable childre affected by HIV ad their families. materials ad resources Iteratioal HIV/AIDS Alliace ad PACT Tazaia (2007), Uderstadig ad challegig HIV stigma: toolkit for actio. Module I: childre ad stigma. 65 family-cetred hiv programmig for childre

68 stadard descriptio implemetatio actios markers of progress stadard 6 Our orgaisatio promotes a familycetered approach reachig childre withi ad through their families ad commuity Family ca be defied as social groups coected by kiship, marriage, adoptio or choice (JLICA 2009). Childre thrive i families. They develop better cogitively, physically, educatioally ad socially. (See: UNICEF (2007), AIDS, public policy ad child wellbeig.) We recogise that ecoomically ad socially strog families are better able to provide care ad urture childre. We therefore promote social protectio measures such as cash trasfers, social grats ad pesios ad child protectio legislatio as the best approach for securig ad stregtheig families ad commuities. Our programmes do ot target idividual childre or measure oly idividual impacts but uderstad that childre affected by HIV are best reached ad supported through itervetios that target the family ad the commuity that cares for childre. We uderstad the importace of stregtheig family health, because childre are better able to cope with their vulerabilities whe their adult caregiver is healthy ad able to provide love ad cogitive stimulatio. Evidece suggests that may childre i istitutioal care have survivig parets. The cost of this care is sigificatly more tha what is eeded by families to care for their ow childre. We therefore strive to keep childre with their families wheever possible. (See: Desmod C., et al (2002), Approaches to carig, essetial elemets for a quality service ad cost effectiveess i South Africa. Evaluatio ad Program Plaig 25: ) Pla programmes that are framed aroud family-cetred care of childre. For childre outside the family or commuity settig, the focus should be o family reuificatio ad the de-istitutioalisatio of childre. Reiforce families capacities to stay together ad provide log-term care, through social protectio measures such as grats, cash trasfers, child protectio policies, basic health services for all family members, ad access to educatio. Recogise the diversity of families ad esure that programmes are reachig ad icludig the most margialised childre ad families such as childre of sex workers, drug users, trasgeders ad me who have sex with me, migrat childre, street ad workig childre, childre i istitutios, ad childre i coflict with the law. Aalyse ad address the additioal barriers faced by the most margialised childre ad families i accessig support. These iclude stigma, discrimiatio, ad crimialisatio. Implemet family-cetred services that itegrate health, educatio, ad social support for childre ad their families. Build the capacity of commuities to assist i the care ad support of childre, supportig additioal child care facilities, paretig traiig, ad access to welfare assistace. Programme documetatio reflects a uderstadig of the diversity of families ad their differig capacities. Commuities are ivolved i the idetificatio of vulerable childre ad families. Programmes ca demostrate the iclusio of the most margialised families. Programme plas demostrate a familycetred approach to the care of childre by usig families as the uit for itervetios. Programmes ca demostrate commuities ivolvemet i decidig how resources for childre are allocated ad used. Advocacy activities are takig place that promote social protectio measures to support childre ad their families. Ogoig advocacy activities are promotig the de-istitutioalisatio of childre by stregtheig families ad supportig family ad commuity fosterig. 66 family-cetred hiv programmig for childre

69 materials ad resources Better Care Network: Joit Learig Iitiative o Childre ad HIV/AIDS (2009), Home truths: facig the facts o childre, AIDS, ad poverty. Meitjes, H., Moses, S., Berry, L. ad Mampae, R. (2007), Home truths: the pheomeo of residetial care for childre i a time of AIDS, Cape Tow: Childre s Istitute, Uiversity of Cape Tow ad Cetre for the study of AIDS, Uiversity of Pretoria. Richter, L. (2008), No small issue: childre ad families. Uiversal actio ow. Pleary presetatio at the XVII Iteratioal AIDS Coferece Uiversal actio ow, Mexico City, Mexico, 6 August 2008, Olie Outreach Paper 3, The Hague: Berard va Leer Foudatio. Save the Childre (2003), A last resort: the growig cocer about childre i residetial care. UNICEF ad ODI (2009), Promotig syergies betwee child protectio ad social protectio. Wakhweya, A., Dirks, R. ad Yeboah, K. (2008), Childre thrive i families: family-cetred models of care ad support for orphas ad other vulerable childre affected by HIV ad AIDS, FHI ad JLICA. 67 family-cetred hiv programmig for childre

70 stadard descriptio implemetatio actios markers of progress stadard 7 Our orgaisatio promotes ad/or provides itegrated, family-cetred services i health, educatio ad social welfare i order to address the eeds ad rights of all childre Itegrated, family-cetred services are comprehesive, coordiated care services that address the eeds of both adults ad childre i a family, ad attempt to meet their health ad social care eeds either directly or idirectly through strategic parterships, likages ad referrals with other service providers. Where services for families affected by HIV are itegrated with other health ad social welfare services there are greater opportuities to reach more people with a more comprehesive rage of support. We uderstad that childre ad their families eed to receive comprehesive services that are harmoised ad coordiated, ot stad aloe services. Childre ot oly eed support with health but also psychosocial support, educatioal support especially i early childhood, ad basic material eeds. We uderstad that itervetios that oly target oe idividual area miss critical opportuities to reach sibligs, family members ad carers. For example, treatmet for parets livig with HIV ca sigificatly improve the survival of childre. Social protectio measures ca stregthe the ability of families to access services themselves. Collaborate with other orgaisatios, istitutios ad govermet service providers to esure services are joied up ad their value ehaced by likages ad referrals to other services ad programmes. Programmes are actively idetifyig where there are gaps i service provisio for childre ad their families. Icorporate childre s eeds ad rights ito the developmet of essetial health, social welfare ad educatio services. Esure that childre ca access appropriate services i key areas such as health, educatio, shelter, psychosocial support, food ad utritio, protectio, ecoomic stregtheig, ad family ad commuity care. Services target differet levels icludig childre, family, commuity, service ad structural/policy levels. Develop programmes that reflect a uderstadig of the differet cotexts childre live i ad the geder relatios that ifluece their ability to beefit from a programme (girls access to school, for example). Programmes demostrate liks ad promote the itegratio of childre s issues withi other services such as health, educatio, ad social welfare, icreasig the umber of childre ad families reached. Services provided to families demostrate that they are age specific ad geder balaced. Programmes are desiged to address specific eeds, for example the eeds of childre with disabilities, street ad workig childre, ad childre of drug users ad sex workers. Needs assessmets have bee carried out ad programmatic resposes developed. materials ad resources Gillespie, S. (2008), Poverty, food isecurity, HIV vulerability ad the impacts of AIDS i sub-sahara Africa, JLICA. Iteratioal HIV/AIDS Alliace (2003), Buildig blocks: Africa-wide briefig otes: resources for commuities workig with orphas ad vulerable childre. Jukes, M., Simmos, S., Smith Fawzi, M.C. ad Budy, D. (2008), Educatioal access ad HIV prevetio: Makig the case for educatio as a health priority i sub-sahara Africa, JLICA. Pece, A. ad Nsameag, B. (2008) A case for early childhood developmet i sub-sahara Africa, Workig paper No. 51, The Hague: Berard va Leer Foudatio. Richter, L., Foster, G. ad Sherr, L. (2006), Where the heart is: meetig the psychosocial eeds of youg childre i the cotext of HIV/AIDS, Berard va Leer Foudatio. Yog Kim, J. et al (2008), Itegratio ad expasio of PMTCT of HIV ad early childhood itervetio services, JLICA/Harvard School of Public Health. Zaveri, S. (2008), Ecoomic stregtheig ad childre affected by HIV/AIDS i Asia: role of commuities, JLICA. Zoll, M (2008), Itegrated health care delivery systems for families ad childre impacted by HIV/AIDS: four program case studies from Keya ad Rwada, JLICA. 68 family-cetred hiv programmig for childre

71 Appedix 2 Glossary Advocacy is a process aimed at chagig the attitudes, policies, laws ad practices of ifluetial idividuals, groups ad istitutios for the bettermet of people affected by the issue. Commuity meas a group of people liked ad iteractig i some way; for example, by locatio (livig i a village), kiship (family ad tribe), occupatio (peer educators) or by havig a commo problem (HIV). People may belog to several differet commuities at ay oe stage of their lives. Child-sesitive social protectio is a evidece-based approach that aims to maximize opportuities ad developmetal outcomes for childre by cosiderig differet dimesios of childre s wellbeig. It focuses o addressig the iheret social disadvatages, risks ad vulerabilities childre may be bor ito, as well as those acquired later i childhood due to exteral shocks, ad addressig them through social protectio itervetios that are child focused. Culture describes what we lear, thik, feel ad do as idividuals ad what our society cosiders importat. Our culture reflects our history ad is based o our social, ecoomic ad evirometal situatio. It is leared from our family ad society, who provide us with guidelies o how to behave as me ad wome, how to raise childre ad how to live. Messages from differet sources also ifluece our culture. All societies chage to take accout of ew kowledge ad situatios. We ca belog to may differet sub-cultures. Developmet is the process ad missio aimed at raisig stadards of livig ad quality of life for people aroud the world. Discordat parters are those where oe parter is HIV positive ad the other is HIV egative. Discrimiatio is whe, i the absece of objective justificatio, a distictio is made agaist a perso that results i them beig treated ufairly or ujustly o the basis of belogig, or beig perceived to belog, to a particular group. Early childhood developmet is the most importat phase for overall developmet throughout the lifespa of a huma beig. Brai ad biological developmet durig the first years of life is highly iflueced by a ifat s eviromet, ad a child s early experieces determie health, educatio ad ecoomic outcomes for the rest of life. Families ad carers play a key role i esurig optimal child developmet. Evaluatio is the periodic assessmet of the relevace, performace, efficiecy, results ad impact of work i relatio to its stated objectives. Geder refers to the socially costructed roles, behaviours, activities ad attributes that a society cosiders appropriate for me ad wome. It dictates the status of me ad wome, ad who has more power. Geder varies from place to place ad ca chage over time ad betwee geeratios. Huma rights are uiversal legal guaratees for all huma beigs, set out i iteratioal stadards, protectig huma digity ad fudametal freedoms ad privileges. Huma rights caot be waived or take away. Impact refers to the loger-term effects produced by a developmet itervetio, directly or idirectly. For example, it may refer to a rise or fall i icidece ad/or prevalece of HIV. Idicators are markers used to measure the results of a itervetio, project or programme. Itegratio refers to differet kids of sexual ad reproductive health ad HIV itervetios ad services that ca be joied together to ehace outcomes. For example, this could ivolve referrals. It is based o the eed to offer comprehesive services. Itervetio is a actio aimed at chagig or iterruptig a specific aspect of a problem; for example, a behavioural itervetio aimed at chagig people s adoptio ad use of codoms. Key populatios are groups at higher risk of beig ifected or affected by HIV. They play a key role i how HIV spreads, ad their ivolvemet is vital for a effective ad sustaiable respose to HIV. Key populatios vary accordig to the local cotext, but iclude vulerable ad margialised groups such as people livig with HIV, their parters ad families; people who sell or buy sex; me who have sex with me; people who use drugs; orphas ad other vulerable childre; migrats ad displaced people; ad prisoers. Likages are the policy, programmatic, services ad advocacy syergies betwee sexual ad reproductive health ad HIV. It refers to a broader huma rights approach, of which itegrated services are oe compoet. Likages ca happe betwee core HIV itervetios ad core sexual ad reproductive health itervetios. Likages also ivolve addressig the social ad structural issues that make people vulerable to sexual ad reproductive ill-health ad HIV. Moitorig is the systematic ad cotiuous assessmet of the progress of a activity or programme over time, which checks that thigs are goig to pla ad eables us to make adjustmets i a well-thought-out way. 69 family-cetred hiv programmig for childre

72 Most-affected people are those who experiece high risk of exposure to HIV or sexual ad reproductive ill-health ad have limited ability to reduce their vulerability to that risk. They may be referred to as key populatios or mostat-risk groups. For example, where same-sex practice is illegal, me who have sex with me have limited access to iformatio or services o safer sex. The ivolvemet of the most-affected people is key to the respose to these problems. Outcomes are the results of a itervetio. Outcomes may iclude icreased service coverage ad utilisatio, or behavioural chages. Outputs are the results of programme activities; the direct products, services, capital goods or deliverables, such as the umber of cousellig sessios completed, people reached ad materials distributed. Outreach services coect sexual ad reproductive health ad HIV prevetio, support ad treatmet services to idividuals or commuities who may have problems accessig them by ormal meas. This icludes meetig idividuals with iformatio ad services, follow-up visits ad educatio activities i remote villages. Participatory approaches refer to the active ivolvemet of people affected by a problem, together with those who are cocered about it, i assessig, plaig, implemetig ad evaluatig programmes. They help to empower margialised groups withi the wider society. They also cotribute to projects tailored to local eeds ad resources, ad a sese of owership that icreases their chace of success. Post-partum care refers to the services a child eeds durig the risky period immediately after a woma has give birth typically for about six weeks. HIV-related post-partum services iclude itervetios to reduce the possibility of HIV ifectig the child through breast milk. It is also a good opportuity to talk about family plaig. Poverty is where basic huma eeds are ot met. These iclude lack of access to food, water, utritio, healthcare ad clothig. The World Bak defies extreme poverty as a perso subsistig o less tha US$1 a day. Risk refers to activities that put a perso at risk of HIV or sexually trasmitted ifectio, uiteded pregacy or other harm; for example, uprotected sexual itercourse. Sesitisatio refers to efforts to chage attitudes withi a society by providig iformatio desiged to icrease people s uderstadig of a problem. Sexual ad reproductive health refers to physical, emotioal, social ad spiritual wellbeig i those areas of life cocered with sexuality ad havig childre. It icludes our feeligs ad desires, sexual relatioships ad activities, havig childre, protectig ourselves from ifectio, ad makig choices about our sexual ad reproductive lives. Social orms are the values, beliefs, attitudes ad behaviours expected ad approved of by society. Social protectio comprises itervetios that offer social assistace; for example, cash grats ad beefits; social isurace, such as pesios; ad social justice, addressig root causes of poverty ad vulerability. Stakeholders are people with a iterest i a project. They iclude those who will be affected by a project, work o it ad fud it. Stigma is the idetificatio that a social group creates of a perso (or group of people) based o some physical, behavioural or social trait perceived as divergig from group orms. Vertical trasmissio refers to the trasmissio of HIV from paret-to-child durig pregacy, delivery or breastfeedig. Efforts to prevet vertical trasmissio are commoly called prevetio of mother-to-child trasmissio or prevetio of paret-to-child trasmissio. Prevetio of paret-to-child is preferable because it ackowledges the resposibility of both parets to reduce the risk of trasmissio. It is also less stigmatisig to wome. Vulerability is a measure of a idividual s or commuity s iability to cotrol their risk of ifectio or ill-health. Programme refers to a overarchig atioal or sub-atioal systematic respose to a developmet problem, ad may iclude a umber of projects ad itervetios. Project is a particular edeavour with a begiig ad a ed. It is aimed at achievig specific measurable objectives that are part of a overall programme objective. Project cycle refers to the stages that a project goes through while it is active. It icludes assessmet, plaig, implemetatio, moitorig, evaluatio ad adjustmet ad/or scalig up. Prophylaxis is a public health itervetio desiged to prevet a perso becomig ifected with a disease. Co-trimoxazole is a atibiotic used as prophylaxis agaist opportuistic ifectios. Atiretroviral therapy ca have a prophylactic effect by reducig a idividual s viral load, lesseig the chace of HIV trasmissio. 70 family-cetred hiv programmig for childre

73 Appedix 3 Stages of developmet age developmet eeds first stage: birth to 1 year secod stage: 1 to 2 years third stage: 3 to 5 years fourth stage: 6 to 12 years fifth stage: 13 to 18 years Normally the baby is held close to their mother or carer most of the time. The baby lears to trust that at least oe perso will respod to their basic eeds for food, cotact (touch) ad comfort. The mother or carer lears to recogise the baby s cry of huger, discomfort or loeliess. If the mother or carer does ot respod, the baby will ot lear to trust ad may develop a strog sese of fear. The child is learig to have some cotrol over the body: walkig, talkig, dressig ad cotrollig their bowels. If the child is frustrated, laughed at or puished harshly durig this stage they ca develop ager agaist adults. A time of exploratio ad experimetatio for the child. It is importat that the child is ecouraged to take iitiative ad ot be puished or blamed whe they make mistakes. This ca block the child s iitiative. Most childre are learig to cooperate with others (at school or home) ad carry out tasks. The child eeds costat ecouragemet as they lear. If the child begis to feel like a failure at this poit they tur this feelig ito blame ad guilt. This is the time for discovery of idetity as a youg woma or ma. Idepedece from parets begis. If a child has developed axiety ad guilt at earlier stages they will fid this time more difficult. They may feel shy, uloved or ucertai. These feeligs ca last for may years. Protectio from physical dager. Adequate utritio ad itroductio of supplemetary foods (exclusive breastfeedig is best). Adequate health care. Safe opportuities to explore the world. Appropriate laguage stimulatio. Lovig affectio. Immuisatio, utritio, protectio. Opportuities to acquire ew motor, laguage ad thikig skills. Opportuities to develop idepedece. Help i learig to cotrol their behaviour. Opportuities to begi to lear to care for themselves. Opportuities to play ad explore. I additio to the above, opportuities to: make choices be creative lear to live withi the guidelies of the family. I additio to the above: ecouragemet to explore opportuities for learig about livig withi the guidelies of family, school, commuity praise rather tha criticism hoest aswers to questios ecouragemet to express feeligs, icludig egative feeligs like ager ad disappoitmet, but i a acceptable way opportuities to participate to speak, share ad lear. I additio to the above: privacy listeig support for uderstadig sexual developmet, sexuality, ad sexual ad reproductive health iformatio support for valuig huma relatioships care ad love, cosideratio ad respect. Adapted from REPSSI (2007) Psychosocial care ad support for youg childre ad ifats i the time of HIV ad AIDS: A resource for programmig ad Eriksso s stages of huma developmet from Iteratioal HIV/AIDS Alliace ad Pact (2007) Uderstadig ad challegig HIV stigma: Toolkit for actio. Module 1 Childre ad stigma. 71 family-cetred hiv programmig for childre

74 Iteratioal HIV/AIDS Alliace (Iteratioal secretariat) Preece House Davigdor Road Hove, BN3 1RE UK Telephoe: +44(0) Fax: +44(0) Registered charity umber: Established i 1993, the Iteratioal HIV/AIDS Alliace (the Alliace) is a global alliace of atioally-based orgaisatios workig to support commuity actio o AIDS i developig coutries. To date we have provided support to orgaisatios from more tha 40 developig coutries for over 3,000 projects, reachig some of the poorest ad most vulerable commuities with HIV prevetio, care ad support, ad improved access to HIV treatmet. The Alliace s atioal members help local commuity groups ad other NGOs to take actio o HIV, ad are supported by techical expertise, policy work, kowledge sharig ad fudraisig carried out across the Alliace. I additio, the Alliace has extesive regioal programmes, represetative offices i the USA ad Brussels, ad works o a rage of iteratioal activities such as support for South-South cooperatio, operatios research, traiig ad good practice programme developmet, as well as policy aalysis ad advocacy. Desig ad illustratio: