THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SYSTEMS TO SUPPORT CHILDREN’S HEALTHY DEVELOPMENT IN COMMUNITIES AFFECTED BY HIV AFFECTED COMMUNITIES IN HEALTHY DEVELOPMENT CHILDREN’S SUPPORT TO SYSTEMS STRENGTHENING IN HEALTH THE OF SECTOR ROLE THE
The role of the health sector in strengthening systems to support children’s healthy development in communities affected by HIV/AIDS
A REVIEW
More information may be obtained from:
Department of Child and Adolescent Health and Development (CAH) World Health Organization 20 Avenue Appia 1211 Geneva 27 ISBN 92 4 159462 4 Switzerland
Tel +41-22 791 3281 /AIDS Fax +41-22 791 4853 WHO Email [email protected] CHILD AND ADOLESCENT HEALTH AND DEVELOPMENT ■ CHILD AND ADOLESCENT HEALTH website http://www.who.int/child-adolescent-health CAH The role of the health sector in strengthening systems to support children’s healthy development in communities affected by HIV/AIDS
A REVIEW ■ CHILD AND ADOLESCENT HEALTH AND DEVELOPMENT DEVELOPMENT AND HEALTH ADOLESCENT AND CHILD CAH WHO Library Cataloguing-in-Publication Data Richter, Linda. Strengthening systems to support children’s healthy development in communities affected by HIV/AIDS : a review. “The World Health Organization wishes to express its gratitude to Linda Richter ... and to Geoff Foster ... for drafting this document”– Acknowledgements. 1.HIV infections – prevention and control. 2.Acquired immunodefi ciency syndrome – prevention and control. 3.Child welfare. 4.Child. 5.Africa South of the Sahara. I.Foster, Geoff. II.World Health Organization. ISBN 92 4 159462 4 (NLM classifi cation: WC 503.7) ISBN 978 92 4 159462 2
© World Health Organization 2006 All rights reserved. Publications of the World Health Organization can be obtained from WHO Press, World Health Organiza- tion, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who. int). Requests for permission to reproduce or translate WHO publications – whether for sale or for noncommercial distribution – should be addressed to WHO Press, at the above address (fax: +41 22 791 4806; e-mail: [email protected]). The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specifi c companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by the World Health Organization to verify the information contained in this pub- lication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. The named authors alone are responsible for the views expressed in this publication. Cover photograph: WHO Photo Library Designed by minimum graphics Printed in France Contents
Preface v Acknowledgements vi
Executive summary 1
Chapter 1. Introduction 4 Summary 9
Chapter 2. Impacts of HIV/AIDS on children 10 Children living with HIV/AIDS 10 Children living with HIV-positive parents 11 Children orphaned by HIV/AIDS: 12 Non-orphaned children living in households that foster orphans 13 Other categories of vulnerable children 13 Children living in communities affected by HIV/AIDS 14 Summary 15
Chapter 3. Responses to children in communities affected by HIV/AIDS 17 International responses to children in communities affected by HIV/AIDS 17 The Framework for the Protection, Care and Support of Orphans and Vulnerable Children Living in a World with HIV and AIDS 18 Non-governmental and community-based organizations 20 International organizations 20 Local organizations 22 Faith-based organizations 24 Family responses to children in communities affected by HIV/AIDS 26 Summary 28
Chapter 4. Psychosocial interventions and psychosocial well-being 29 Psychosocial interventions 30 Psychosocial well-being of children 31 Focus on early child development 34 Shortcomings of approaches to date 36 The potentially misguided targeting of orphans. 36 The inappropriate institutionalization of vulnerable children 37 Failure to adequately support family and community responses to vulnerable children 37 Summary 37
iii THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Chapter 5. Health sector responses to children affected by the HIV/AIDS epidemic 39 Lack of involvement by the health sector in the situation of children affected by HIV/AIDS 39 Anti-retroviral treatment programmes 40 Prevention of mother-to-child transmission programmes 41 Opportunities for health services through increasing HIV/AIDS resource provision 42 Primary health care and children’s healthy development 44 Advantages of the health sector in spearheading multi-sectoral child-focused HIV/AIDS responses 47 Summary 48
Chapter 6. Systemic approaches to promote children’s healthy development 49 HIV/AIDS and the Continuum of Care 51 Continuum of care within government health care systems 52 Continuum of care between health centres and other groups and institutions in the community 52 Continuum of care involving community groups and non-health institutions 53 Continuum of care and children affected by HIV/AIDS – Rethinking the Continuum of Care 54 Summary 55
Chapter 7. The role of the health sector in strengthening support systems for children 56 Summary 59
Chapter 8. Conclusions and recommendations 60 Summary 63 References 64
iv Preface
his document is a review of the scientifi c focus from psychosocial support programmes Tevidence and practice experience in providing to the psychosocial well-being of children, and what has come to be called psychosocial program- from psychosocial support programmes to the ming and support for children infected with and need to strengthen services, especially health affected by HIV, and their caregivers. A great deal services. The psychological well-being of chil- of attention is currently focused on psychosocial dren is the outcome of many conditions and support programmes for children living in com- processes in addition to psychosocial support munities affected by HIV/AIDS. Psychosocial programmes. In addition, a broader and stronger support programmes include a range of inter- response, emanating from and supported by ventions such as awareness raising, counseling, the health sector has the potential to have a far group experiences for children, opportunities for greater impact on the psychosocial well-being of recreation, and the like. However, several techni- children than can be achieved with stand-alone cal consultations, as well as the available evidence psychosocial support programmes. Although and experience, suggest that it is necessary, in the greatest wealth of research and experience the face of the combined effects of the HIV/AIDS comes from sub-Saharan Africa, because of the epidemic and poverty, to support the psychosocial concentration of the epidemic in the region, the well-being of vulnerable children through as arguments made, evidence adduced and conclu- many avenues as possible. Efforts to promote the sions reached regarding the support of children psychosocial well-being of vulnerable children are applicable to all contexts. The review takes require conditions and assistance that go beyond as its starting point, the consensual strategies psychosocial support programmes, and there is outlined in the Framework for the Protection, Care now a strong call for integrated services to families and Support of Orphans and Vulnerable Children and children affected by HIV/AIDS. Amongst Living in a World with HIV and AIDS. Access to these services, the health sector plays a critical services, including for health, is one of the fi ve role, in providing direct comprehensive services key strategies. Health services can assist vulner- to affected children and families. However, health able children and families, as well as provide the systems also have the potential to play a powerful infrastructure, organizational capacity and inte- indirect role by assisting and supporting commu- grative approaches needed to draw together the nity-based initiatives to provide assistance to the many efforts at the family and community level most affected children and their families. to respond to the hardships of children affected This review covers the reasons for the shift in by HIV/AIDS, and their caregivers.
v
Acknowledgements
he World Health Organization wishes to work related to the production of this docu- Texpress its gratitude to Linda Richter, Execu- ment. Meena Cabral de Mello, Scientist in the tive Director of the Child, Youth, Family and Department of Child and Adolescent Health and Social Development programme in the Human Development, World Health Organization was the Sciences Research Council of South Africa, and Coordinator of this project, and Hui Chen, WHO to Geoff Foster, Consultant in Paediatrics and Intern provided editorial support. Child Health, Mutare, Zimbabwe, for drafting this document. More information may be obtained from: Valuable comments and suggestions were Department of Child and Adolescent Health received from the following experts who reviewed and Development (CAH) the document before its fi nalization. They include: World Health Organization Sara Austin, World Vision; Meena Cabral de Mello, 20 Avenue Appia WHO; Delanyo Dovlo, WHO; Joan Duncan, Con- 1211 Geneva 27 sultant Clinical Psychologist; Ilgi Ertem, Ankara Switzerland University School of Medicine; Brian Forsyth, Tel: +41-22 791 3281 Yale University School of Medicine; Sandy Gove, Fax: +41-22 791 4853 WHO; Peggy Henderson, WHO; Tanja Houwel- Email: [email protected] ing, University College London; Berit Knudson, website : http://www.who.int/ Save the Children, Norway; Heather MacLeod, child-adolescent-health World Vision International; Lynette Mudekunye,
Save the Children South Africa; Donata Origo, Consultant; Phyllida Travis, WHO; Tanja van de Citation: Linde, Save the Children USA; John Williamson, Senior Technical Advisor, Displaced Children and Richter, L. and Foster, G. (2005). Strengthening Orphans Fund of USAID. Systems to Support Children’s Healthy Development in WHO also wishes to extend its deep gratitude Communities Affected by HIV/AIDS. Geneva: Depart- to Save the Children (Redd Barna), Norway, for ment of Child and Adolescent Health and Develop- the fi nancial support provided to carry out the ment (CAH), World Health Organization.
vi Executive summary
hildren have not, to date, received due atten- greatest proportion of children born to parents Ction in the global effort to prevent, treat and living with HIV/AIDS are, themselves, uninfected. ameliorate HIV/AIDS. The impact of the HIV/AIDS In general, though, the survival and development epidemic is experienced most severely at the of these children is precarious. Most children will household level because it severely exacerbates outlive their caregivers, bearing a large portion poverty and the supportive caregiving systems of the burden of care for a chronically ill parent, of families. The epidemic is having a progressive and/or suffering the resulting family deprivation. and cumulative effect on children by depleting Children who have to care for ill parents or suffer their care resources through parental illness, neglect as a result of the incapacitation and dis- death, destitution and an increased burden of ability of parental illness, and children in families care by families. This is occurring in a context of which foster in affected children are themselves generally poor access to services and insuffi cient additionally prone to poverty and even destitu- support from governments and the international tion. However, many of these children remain community. In desperate attempts to be of assist- invisible to the best resourced organizations, ance, uncoordinated and sometimes inappropriate who limit the greatest part of their resources actions are being taken to help vulnerable chil- and intervention efforts to orphaned children, dren. Much of the current effort is restricted to not all of whom are vulnerable. Because of the orphans, despite the fact that many other children way orphans are identifi ed in the context of the are deeply affected by the epidemic and in very AIDS epidemic, as maternal, paternal or double diffi cult circumstances. Under these conditions, orphans, the majority of orphans have, and are there is widespread consensus that strengthening living with surviving parents; many others are systems to support children living in communities in the care of close and affectionate family and affected by HIV/AIDS is the best option for achiev- need little additional assistance. Only time heals ing population-level improvements in children’s the terrible experience of losing a parent dur- health, psychosocial well-being, and educational ing childhood. The families that take them in, development. The health sector is well placed, however, have to stretch their meagre resources through its relatively systematic approach and among increasing dependents, and caregivers infrastructure that reaches into most affected are often desperately in need of material, social communities in developing countries, to lead and spiritual support. Many children are doubly multi-sectoral responses that facilitate the holistic disadvantaged by HIV/AIDS, co-occurring as it care and protection of children living in com- does with widespread poverty, as well as confl ict munities affected by HIV/AIDS. and instability. There is a danger that programmes The lives of all children living in communities that target only orphans may inadvertently affected by HIV/AIDS are becoming difficult. undermine spontaneous care by extended kin, Amongst these, sub-groups of children are misdirect resources to children who may not affected in particular ways. These sub-groups need additional external assistance, and overlook include children infected with HIV, children large numbers of extremely vulnerable children. living with chronically ill parents, orphaned chil- In the main, what is needed is improved access dren, and other categories of vulnerable children. of all children and families in AIDS-affected Infected children, especially young children, countries to health, education, social welfare, and have received little attention to date, and most economic strengthening to improve their health children living with HIV/AIDS die prematurely and psychosocial well-being. from poverty-related diseases, as well as lack of Community initiatives and extended kin access to appropriate treatment and support. The were the fi rst to respond to the needs of affected
1 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
children, and continue to be in the front line. The ties affected by HIV/AIDS are essential, separate emergence of community-based care programmes programmes to address children’s psychosocial is one of the outstanding features among responses needs may not be the optimum use of resources. to the epidemic. These groups play a critical role Support from families and communities, and in easing the impacts of the epidemic, particularly also from peers, enable children to cope with on children. Extended families absorb the largest extremely diffi cult circumstances. A key strategy portion of the economic costs of the epidemic on to support children’s psychosocial well-being is households, and effective mechanisms need to be to promote care as part of their everyday life. developed to get additional resources to families Parents and caregivers may need support to and communities to enable them to continue to enable them to provide care and protection for support the worst affected children. The fact that children. Children have a multiplicity of needs, families are absorbing the care of affected children and there are age differences in the kind of sup- does not mean, however, that they are doing so port children require. The affectionate care of without tremendous diffi culty. The involvement of families and communities is the only effective faith-based organizations has enormous potential and sustainable way of ensuring children’s well- to alleviate suffering and needs to be recognized, being. Stand-alone psychosocial interventions for supported and expanded. International agencies children can be seen as foreign and may be expe- and governments have been slower to generate rienced as an imposition. They may also be too responses, beyond policy, that match the size narrowly focused to meet the needs of children and time scale of the problems affecting children identifi ed as vulnerable. For these reasons, there and families. is agreement that measures to support children’s In 2004, an outstanding policy document was healthy growth and psychosocial well-being released, entitled the Framework for the Protec- should be incorporated into other programmatic tion, Care and Support of Orphans and Vulnerable responses to the HIV/AIDS epidemic. The avail- Children Living in a World with HIV and AIDS. The able evidence and experience strongly cautions Framework, endorsed by 23 of the leading agen- against specialized psychosocial programmes cies in the fi eld, built on several previous docu- for “AIDS orphans”. Such efforts may increase ments, under the title “Children on the Brink” isolation and stigmatization. Lessons learnt in (1997, 2000, 2004) The document is a consensual, other fi elds of intervention indicate that efforts authoritative statement of strategy that takes into to promote children’s psychosocial well-being account available knowledge and experience to in the face of adversity require that care systems date, and was developed through a consulta- around the child be mobilized and strengthened tive process that took place over several years. in an integrated way. This is consistent with what The Framework recommends a comprehensive is called a rights-based approach to children. It is approach to affected children, including efforts especially important to counter the institutionali- to support children’s healthy development. In zation of vulnerable children. Institutional care particular, the Framework draws attention to the does not benefi t children, and can harm especially importance of sustaining families and extended young children. In addition, institutionalization is kin in their key roles of caring for and protect- expensive and draws resources away from efforts ing children. Despite this strong conclusion, few to support families and communities who take in resources are reaching families and communities, vulnerable children. especially households that are already on the edge To date, the health sector has paid little atten- of destitution. One of the major challenges facing tion to the situation of children living with, and efforts by international and local governments, affected by HIV/AIDS, especially young children. donors and philanthropic organizations, is the Both anti-retroviral and prevention of mother- development of mechanisms for channeling to-child programmes must be expanded. These resources to grassroots organizations and to programmes have the potential to strengthen deeply impoverished families. the health care system, in general, and services The distress experienced by children is well for children, in particular. Both need to be recognized, as is the negative impact of the AIDS extended to promote the healthy development of epidemic on their development, particularly as a young uninfected children who are living with result of unstable caregiving, inadequate nutri- HIV-positive parents, and appropriate care and tion, lack of access to health care, and exclusion treatment for children living with HIV/AIDS. In from education. While efforts to support the the current climate, there are clear advantages for healthy development of children in communi- the health sector to lead a comprehensive primary
2 EXECUTIVE SUMMARY
care approach to children living in communities for assessment, implementation and evaluation; affected by HIV/AIDS. These advantages include training programmes; and pilot projects, to take a holistic view of health that accommodates a this forward. multi-sectoral response; a strong emphasis on The recommendations offered are that the children, especially young children; considerable health sector play the following roles in respond- infrastructure and reach relative to other services, ing to children living in communities affected by as well as infl uence on national agendas. At a local HIV/AIDS: level, health services, together with schools, could 1. Lead a holistic response to children in com- establish strong linkages with community-based munities affected by AIDS that is founded on initiatives to form Community Care Coalitions for the UNAIDS/WHO Framework. children made vulnerable by the epidemic. Health services have a long history in programmes to 2. Use the Framework to promote integrated strengthen health, school and community efforts responses to children based on knowledge and to prevent and treat illness, support vulnerable experience gained within WHO, by partners children and promote their growth and develop- and by countries. ment. In particular, the Integrated Management of 3. Promote health centres as nodes of support, Childhood Illness (IMCI) is a health facility and working together with community initiatives community initiative that fi ts well with several on the common agenda articulated by the other approaches deemed to benefi t vulnerable Framework to support children and families. children, including Comprehensive Primary Health Care, the UNAIDS-led Framework, and 4. Strengthen the community component of IMCI the concept of Community Care Coalitions. What and ensure that it is used to organize and coor- is needed is leadership from the health sector dinate health sector responses to children in for the development of integrated models; tools communities affected by HIV/AIDS.
3 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Chapter1 Introduction
ccording to the annual AIDS Epidemic generation adults become ill and die (Marais, AUpdate, published by UNAIDS/WHO in 2005). The impact of the epidemic is experienced December 2004, close to 40 million people world- most severely at the household level because it wide have been infected with HIV, and more than exacerbates poverty (Heywood, 2004). As noted 3 million people died of AIDS during 2004 (see in the 2004 UNAIDS Figures 1 and 2). The vast majority of infections, Report, the living serious illness and deaths occur in poor countries. conditions of many The impact of the epidemic Further, infections and deaths peak in adults poor communities is experienced most during their most productive years, when they were already on the severely at the household are most likely to have young children, and also decline when they level because it severely responsibility for the care and support of depend- began to experience exacerbates poverty. ent family members, including the aged. The illness and death due impact of advanced epidemics is currently being to AIDS. In these most severely experienced as a crisis of care for households, the major share of scarce resources children, sick people, aged and other vulnerable is diverted to medical and funeral costs (Steinberg groups. Employment and livelihood activities are et al, 2002). being lost, and social networks of support among The difficulties experienced by children, families and communities are being weakened caregivers and families living in communities as disproportionately large numbers of middle- affected by AIDS are increasing dramatically
Figure 1. Adults and children estimated to be living with HIV as of end 2004
Eastern Europe and Central Asia Western Europe 1.4 million 610 000 (920 000–2.1 million) North America (480 000–760 000) 1.0 million East Asia (540 000–1.6 million) 1.1 million (560 000–1.8 million) North Africa and Middle East Caribbean 540 000 440 000 (230 000–1.5 million) South and South-East Asia (270 000–780 000) 7.1 million (4.4–10.6 million) Sub-Saharan Africa Latin America 25.4 million 1.7 million (23.4–28.4 million) (1.3–2.2 million) Oceania 35 000 (25 000–48 000)
4 INTRODUCTION
Figure 2. Estimated adult and child deaths from AIDS during 2004
Eastern Europe and Central Asia Western Europe 60 000 6 500 (39 000–87 000) North America (<8500) 16 000 East Asia (8400–25 000) 51 000 (25 000–86 000) North Africa and Middle East Caribbean 28 000 36 000 (12 000–72 000) South and South-East Asia (24 000–61 000) 490 000 (300 000–750 000) Sub-Saharan Africa Latin America 2.3 million 95 000 (2.1–2.6 million) (73 000–120 000) Oceania 700 (<1700)
as the epidemic matures and deaths increase The impact of the AIDS epidemic on children (Bedri et al, 1995; Nyambedha et al, 2001; and families is frequently illustrated by the Shetty & Powell, 2003). Under these conditions, increase in orphaning, often referred to as the the worst affected children experience multiple third wave of the epidemic, following infections losses. They lose: and AIDS deaths (Foster & Williamson, 2000; World Bank & UNICEF, 2002). Orphaning, ● their health and vitality, through infection, defi ned as a child under the age of 18 years who inadequate nutrition, and poor health care; has lost one or both parents (UNAIDS, UNICEF, ● their economic support through the constric- USAID, 2004), is one of the basic metrics by which tion and collapse of livelihoods resulting from the stage of the AIDS epidemic is visualised. the illness and death of breadwinners and Figure 3 shows three curves. The fi rst curve rep- other adults in the extended family previously resents HIV prevalence and, because of the long engaged in economic support and subsistence incubation period, AIDS cases lag behind by 5–10 activities; years. People with AIDS illness need treatment and care, and will die unless dramatic changes ● their parents and other primary caregivers to in the effectiveness, availability and cost of treat- illness and death; ment occur. The third curve represents AIDS ● their families, as they are parted from caregiv- impact. This includes the death of young adults, ers and siblings because of distress mobility orphaning, loss of work and livelihoods, and the and migration; deepening of poverty. However, in considering ● their connections to social institutions as a the impact of HIV/AIDS on children, two points result of stigma in the community and with- need to be taken into account – fi rstly, HIV/AIDS drawal from school because of poverty, lack of is not the only cause of orphaning in some of the supervision, and work obligations in the home, worst affected countries and, secondly, a focus on and orphaning is misleading because the impact of the epidemic on children goes beyond orphans. ● their human right to development in an envi- An analysis of survey data in 40 countries ronment that meets their basic needs for health, concluded that “orphanhood is common in sub- education, care and protection (NEPAD et al, Saharan Africa, irrespective of the AIDS epidemic” 2004).
5 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Figure 3. Prevalence, case and impact children orphaned. For example, in South Africa curves of the epidemic in 2001, just over 600 000 children were recorded in the Census as having lost both parenrs. How- ever, given fertility and HIV prevalence rates HIV prevalence at the time, it can be estimated that more than Numbers A 2.5 million South African children had a mother A 2 A 1 who was alive, but infected with HIV. Without Orphans effective treatment, these children are at risk, in AIDS cumulative years to come, of a deteriorating quality of life as an increasing share of household resources,
B B1 including emotional and social support, are directed to assisting one or more sick adults and eventually burying them, mostly at the expense of T1 T2 Time children’s nutrition, health and schooling. Other impacts of the epidemic on children, many of which are recurrent and progressive, are outlined (Monasch & Boerma, 2004, p. 565). Figure 4 in more detail in Chapter 2. shows the estimated proportion of orphaning Catastrophic predictions of widespread pathol- among children attributable to AIDS as com- ogy, violence and social disorder associated with pared to other causes, in selected sub-Saharan high levels of orphaning have been tempered by countries. The fi gure illustrates the increase in sober analyses (Bray, 2003; Richter, 2004a). None- orphaning due to AIDS, as well as the fact that theless, many children in communities affected by large proportions of children in this region are HIV/AIDS suffer signifi cant health, educational, also orphaned as a result of widespread confl ict social and personal disadvantages, including and endemic poverty. deepening poverty, premature termination of their As indicated above, the impact of HIV/AIDS education, residential instability and psychosocial goes beyond orphaning. Very large numbers distress (Dunn 2005a; Foster & Germann, 2002 of children are affected by the AIDS epidemic Foster & Williamson, 2000; Richter et al, 2004; – greatly in excess of estimates of the numbers of Sherr 2005a; Williamson, 2000). These effects, consequent on both caregiver/parent illness and Figure 4. Causes of orphaning in 11 death, are illustrated in Figure 5. countries in sub-Saharan Africa in which Children have not, to date, received due atten- more than 15% of all children were tion in the global effort to prevent, treat and amel- orphans in 2003 iorate HIV/AIDS. The diffi culties experienced by children are increasing as the epidemic matures. Botswana These are indexed by increasing child mortality, lower school attendance and achievement levels Zimbabwe (Birdthistle, 2004), as well as the decline of human Lesotho and social capital in families and communities. These trends indicate that country-level develop- Zambia ment goals are being severely compromised in Swaziland the worst affected countries (Deininger, Garcia & Subbarao, 2003). It is also clear that the problems Rwanda experienced by children and families are not Dem. Rep. Congo one-dimensional. Children are affected by the epidemic in many ways, requiring the coordina- Central African Republic tion of all sectors to ensure that children’s health Mozambique and well-being are protected. The impact of HIV/AIDS on children overlaps Burundi to a considerable degree with the known effects Angola of poverty on children (Richter, 2004a; Richter et al, 2004). This is especially because HIV/AIDS 0 5 10 15 20 impacts on household livelihoods, and because Orphans (%) of a lack of essential services in resource-poor All other causes AIDS environments. Established measures of child
6 INTRODUCTION
Figure 5. Problems among children and families affected by HIV/AIDS
HIV infection
Children become Increasingly serious illness care providers Psychological distress
Economic problems
Deaths of parents and young children
Problems with inheritance
Children withdraw from school Children without adult care
Inadequate food Discrimination Problems with shelter and material needs Exploitative child labour Reduced access to health services Sexual exploitation Increased vulnerability to HIV infection and other diseases
Source: Lippincott Williams & Wilkins, cited in Foster & Williamson, 2000
vulnerability exist in other sectors outside the lence on children (Tolfree, 2004). Nonetheless, HIV/AIDS fi eld that are strongly correlated with the AIDS epidemic is unique in its effects on poverty. For example, a substantial number of children in several respects. Firstly, HIV/AIDS children living in Africa lack access to health care, illness and death accelerate poverty and occasion are malnourished, out-of-school or are involved in often multiple, compressed shocks to economic excessive forms of child labour. Such large num- activities and livelihoods, family life and children. bers of vulnerable children provides the rationale Secondly, children may experience sequential for strengthening systems that improve the situa- losses of caregivers as fi rst one parent, another, tion of all children living in communities affected other caregivers, and by HIV and AIDS to complement programmes also aged grandpar- that support the most vulnerable children ents die. This can While the term AIDS There are also important lessons to be learnt lead to a high degree orphan is frequently from work done on the effects of war and vio- of instability in their used as a rallying cry to residential circum- mobilise resources for stances and relation- Figure 6. Vulnerability of children in children affected by AIDS, ship with caregivers sub-Saharan Africa it also labels children in (Hosegood et al, inappropriate ways and forces Sector Measure of vulnerability % 2004). Thirdly, AIDS young survivors to bear the remains a highly Health 1-year-old children not immunized 35 brunt of widespread AIDS against diphtheria/pertussis/tetanus stigmatised condi- stigmatisation. (DPT3) tion that can result Health Under-5 mortality rate in 2004 17.1 in social exclusion and rejection of sur- Health Under 5s who are moderately or 28 viving children. While the term AIDS orphan severely underweight is frequently used as a rallying cry to mobilise Education Primary school entrants not 34 resources for children affected by AIDS, it also reaching grade 5 labels children in inappropriate ways and forces Protection Child labour (5–14) years – boys 37 young survivors to bear the brunt of widespread – girls 34 AIDS stigmatisation. Because of secondary, Source: The State of the World’s Children, 2006 problematic effects of labelling individuals, rather
7 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
than their condition or circumstance, we advocate level improvements the use of the term children living in communities in children’s health, No child should be deprived affected by HIV/AIDS (abbreviated as CCA) as a their psychosocial of access to effective health general term for all categories of children affected well-being and their services (Article 24) … The by the epidemic. educational devel- child has the right to benefi t Throughout the world, the mainstay of assist- opment (Richter, from social security (Article ance for children living in communities affected 2004a; Richter et 26) … it is the State’s duty by AIDS comes from their families and communi- al, 2004; UNAIDS, to ensure that primary ties (Foster, 2005a). Surviving parents, extended UNICEF, USAID, education is free and kin, especially grandmothers (Nyambedha et al, 2004). compulsory (Article 28). 2003a, 2003b), older siblings, neighbours, faith- The problems fac- based and other community care groups, are the ing AIDS-affected primary source of support for almost all children children and their and families living in communities affected by families are many and varied. Since a single kind AIDS. Community-based, non-governmental of intervention is unlikely to produce signifi cant, organizations have adapted, and have been sustained improvements in their well-being, formed, to provide assistance for affected children what is needed is a set of collective programme and families. Beyond these, local, national and responses to strengthen affected households and international governmental and non-govern- communities, supported by constructive national mental programmes policies and the mobilization of resources. The have been developed Framework for the Protection, Care and Support of There is widespread to address one or Orphans and Vulnerable Children Living in a World consensus that more of the problems with HIV and AIDS (UNAIDS, UNICEF & USAID, strengthening systems to that affect children 2004) provides a broad range of stakeholders from support children living in in particular. In the all sectors of society with a set of strategies that communities affected by main though, these can improve the care and protection of vulnerable HIV/AIDS is the best option efforts are highly children. Though the range of responses that are for achieving population localised, with very needed for children affected by HIV/AIDS are level improvements in wide gaps between outlined in the Framework, there is, in general, children’s health, their programmes. The a lack of strategic analysis of the ways in which psychosocial well-being largest number such support can be mobilised and provided. Up and their educational of children and to now, the health sector has played a very limited development. families receive no role in providing or facilitating care and support external help at all. for increasing numbers of vulnerable children. While innovative However, the health sector is well placed – by approaches have been developed and implemented utilizing its systems approach and an infrastruc- to assist individual children and families, includ- ture that reaches into most affected communities ing to support children’s psychosocial develop- in developing countries – to lead multi-sectoral ment (Richter et al, 2004), large scale, universal, responses that facilitate the holistic care and interventions, underpinned by government policy protection of chil- together with international support, are needed dren living in com- to have any signifi cant effect on the well-being of munities affected by the very large number of affected children over HIV/AIDS. … the health sector is the long haul of the epidemic (Williamson, 2000). A recommenda- well placed, by utilizing Given the explosive and widespread nature of the tion to strengthen its systems approach and HIV/AIDS epidemic, and its propensity to disrupt systems of health, an infrastructure that families, communities and developmental gains education, and social reaches into most affected achieved through socio-economic development, welfare is a rights- communities in developing interventions to respond to the psychosocial and based approach, countries, to lead multi- educational needs of children have to match the and the Convention sectoral responses that scale and gravity of the challenges that confront on the Rights of the facilitate the holistic care children’s development. There is widespread Child and the Afri- and protection of children consensus that strengthening systems to support can Charter on the living in communities children living in communities affected by HIV/ Health and Welfare affected by HIV/AIDS. AIDS is the best option for achieving population of Children specifi -
8 INTRODUCTION
cally address children’s rights to essential serv- with one or more chronically ill adults, or who ices. take on adult responsibilities and who share The HIV/AIDS pandemic provides an unparal- their family’s meagre resources with kin children leled opportunity to advance systems to promote taken into their household, are all affected by the health and protection of vulnerable children the epidemic. Many children in communities in communities affected by HIV/AIDS. Increasing affected by HIV/AIDS suffer signifi cant health, global and national resources are being made educational, social and personal disadvantages, available to strengthen responses to children including deepening poverty, premature termina- affected by HIV/AIDS. The current prolifera- tion of their education, residential instability and tion of grassroots initiatives in mitigation of the psychosocial distress. Under these conditions, consequences of HIV/AIDS on children provides programmes that specifi cally target orphans are another window of opportunity. The health sector in danger of stigmatising affected children and is uniquely placed to utilize HIV/AIDS resources placing them at risk of community and family to strengthen health, education and community reprisal. In addition, very many other vulnerable efforts to improve the healthy development of all children are likely to be overlooked. children, as envisaged in the defi nition of health Many affected families receive no formal assist- advocated by the World Health Organization.1 The ance from external agencies, and their survival health sector can play a critical role in supporting depends on the support they receive from kin, and strengthening policies and programmes to neighbours and community groups that have ensure that most vulnerable children have access formed to give help to the worst affected house- to preventive, promotive and curative services, holds. It is a case of the poor helping the destitute, and that reinforce grassroots responses to the with little direct aid from governments, or inter- increasing numbers of orphans and vulnerable national and national organizations. Deepening children in distressed families. poverty is compromising national development achievements as well as any hope of meeting the Summary Millennium Development Goals. In the face of the scale and anticipated dura- The HIV/ADS epidemic is at different stages tion of the AIDS epidemic, there is widespread around the world. In most sub-Saharan coun- consensus that strengthening systems to support tries, the epidemic is fully into its third stage, children is the best option for achieving popula- most apparent in the increasing need for the care tion level improvements in children’s health, their of sick and vulnerable individuals, including psychosocial wellbeing and their educational children. The way in which the epidemic has development. This is consistent with a right-based intensifi ed poverty is experienced most severely approach to child wellbeing. The health sector at the household level and children are affected is well placed, by utilizing its systems approach in multiple ways. and an infrastructure that reaches into most Orphaning, which is increasing very rapidly affected communities in developing countries, as parents and other caregivers die, is only one to lead multi-sectoral responses that facilitate the facet of the impact of HIV/AIDS on children. holistic care and protection of children living in Children themselves living with HIV/AIDS or communities affected by HIV/AIDS.
1 World Health Organization (1948). Preamble to the Consti- tution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Offi cial Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.
9 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Chapter2 Impacts of HIV/AIDS on children
he AIDS epidemic is resulting in unprec- lion children die each year before the age of fi ve Tedented welfare problems for massive num- years, mostly from preventable causes and dis- bers of families that affect children in a number eases that can be easily treated (Jones et al, 2003). of ways. Although potentially overlapping, several Over half of deaths in children under fi ve are categories of children affected by the HIV/AIDS associated with malnutrition (Jones et al, 2003). epidemic can be discerned. As indicated previ- Similarly, most deaths among CLHA result from ously, though, these categories of children are common diseases such as bacterial pneumonia, best referred to collectively as children living in rotaviral and bacterial diarrhoea, malnutrition communities affected by HIV/AIDS (CCA). and malaria – rather than from AIDS-related opportunistic infections (ANECCA, 2004). At Children living with HIV/AIDS least 90% of HIV-infected children experience wasting and nutritional depletions during their Globally, there are 2.1 million children living course of illness (Bobat et al, 1998; Miller et al, with HIV/AIDS. The term “children living with 2005). Deaths from poverty-related diseases thus HIV/AIDS” (CLHA) is recommended for this account for the extremely low life expectancy of particular sub-group of children, because it CLHA in sub-Saharan Africa. In this severely conceptually links affected children with people affected region, most CLHA die before reaching living with HIV/AIDS (PLHA) and the rights- the age of two years (Bobat et al, 1998; Newell based PLHA movement. The term “HIV-infected et al, 2004). In comparison, the median survival children” is not used for the same reasons that time for CLHA in Western countries prior to the led people living with HIV/AIDS to reject similar establishment of highly active anti-retroviral treat- terminology – because it is stigmatizing. When ment was 11 years (Blanche et al, 1995; 1997). For used generally, the term “pediatric AIDS” leads this reason, public health measures to promote to an over-emphasis on medical- and treatment- the health and well-being of all children in com- related issues at the expense of psychosocial and munities affected by HIV/AIDS is an important educational concerns in relation to children living aspect of extending, and improving the quality with HIV/AIDS (Miller et al, 2005). of the lives of CLHA, together with paediatric Children constitute 6 percent of people living antiretroviral treatment. with HIV worldwide, 13 percent of new HIV/AIDS From the start of the epidemic, neuropsy- infections and 17 percent of total HIV/AIDS deaths chological problems in HIV-infected and HIV- (UNAIDS, 2004b). exposed children have been reported. These In eight southern include developmental delays in one domain or Deaths from poverty-related African countries another, cognitive anomalies, learning problems, diseases thus account for between 2 and 4 and language diffi culties (Armstrong et al, 1993; the extremely low life percent of children Sherr, 2005a, b). As with other biologically- expectancy of children under 15 years of triggered conditions in children, the severity of living with HIV/AIDS in age are HIV-positive the manifestation and the degree of dysfunction sub-Saharan Africa (UNAIDS 2004b; the child shows is heavily dependent on the UNICEF 2003). In capacity of the care environment to provide coun- fi ve high HIV preva- teractive infl uences. Where the developmental lence countries in environment is supportive, as a consequence of southern Africa, between one third and one half material, social and personal resources, negative of deaths of children under fi ve are from AIDS effects on behaviour and functioning are reduced (Walker, 2002). Throughout the world, 10.8 mil- (Coscia et al, 2001; Sameroff & Chandler, 1975).
10 IMPACTS OF HIV/AIDS ON CHILDREN
Only a few studies of neuropsychological func- grammes. In addition, large numbers of children tioning have been conducted among CLHA in both younger and older, are involved in caring for severely AIDS-affected poor countries, and all sick and dying parents, often with little outside have confi rmed problems of one kind or another help and in conditions of poverty, lacking water (Bell et al, 1997; Bobat et al, 2001; Boivin et al, and sanitation (Keigher et al, 2005; Marcus, 1999; 1995; Msellati et al, 1993). Given the strains on Sengendo & Nambi, 1997). The psychological and caregiving environments resulting from poverty mental health impact of chronic parental illness as well as the impact of HIV/AIDS on families, it is possibly one of the most poorly understood is likely that behavioural and cognitive impair- and neglected diffi culties faced by children living ments in CLHA will manifest. In turn, care for a in communities affected by HIV/AIDS in poor sick, neurologically- or behaviourally-impaired countries (Giese et child is likely to place very severe demands on al, 2003a). caregivers The health and Around 80 percent life situation of any of children born to woman is critical Children living with HIV-positive HIV-positive mothers to the health and parents are uninfected at birth. life chances of her Nonetheless, studies Around 80 percent of children born to HIV-posi- children, not only have found HIV-negative tive mothers are uninfected at birth. Nonetheless, during pregnancy, children born to HIV- studies have found HIV-negative children born to childbirth and the positive mothers have higher HIV-positive mothers have higher mortality rates early months of mortality rates than other than other HIV-negative children in the commu- life, but through- HIV-negative children in nity. Most children born to HIV-positive mothers out childhood. A the community. reach fi ve years of age or more before their mother mother’s capacity dies (Nakiyingi et al, 2003). Uninfected children for child care, or that born to mothers with HIV infection are reported of another primay to have more attention, social adjustment and caregiver – the time and energy she can devote behaviour problems than comparison children to her children, the conditions in the home, her (Nozyce, 1994; Kotchick et al, 1997; Peterson et material resources, her skills, knowledge and al, 2001; Esposito et al, 1999). The mechanisms authority – all frame a child’s passage from child- for the impact of maternal HIV infection on hood to physical, social and emotional maturity. children remain to be elucidated. HIV infection Whether or not an HIV-infected mother transmits may produce neuro-pathological dysfunctions in the virus to one or more of her children, her uninfected unborn children, directly as a result of infection, illness and early death from AIDS will the effects of human immunodefi ciency virus or, have a profound impact on all of them. If she is indirectly, as a result of exposure to antiretroviral the key provider of food, clothing and household medications or to the mother’s own psycho-neuro- amenities for her children, a mother’s death has immune responses to stress. Regardless of their profound social and economic consequences for cause, psycho-developmental effects on children her orphaned children and for her husband if he are also likely to be mediated through compro- survives, and her family. In addition to maternal mised parenting and childcare practices associ- effects, the presence of an HIV-positive sibling ated with maternal HIV infection (Forsyth, 2003; in the family may lead to parents’ prioritising Pelton & Forehand, 2005: Peterson et al, 2001). the needs of a chronically ill child to the neglect It is well established, in studies not involving of their uninfected, relatively healthier, brothers HIV/AIDS, that maternal depression and lack of and sisters. social support for caregivers have adverse effects The fact that there are in the region of 36 mil- on children’s development, particularly in disad- lion prime-age adults worldwide living with HIV vantaged communities (Patel et al, 2004; Cooper infection, is an indication that very large numbers & Murray, 1998). Increasing numbers of children of children live with HIV-positive parents. Around of HIV-positive mothers also face challenges to the one-fi fth of HIV-positive adults are urgently in establishment of maternal-infant bonding and to need of antiretroviral treatment, suggesting that their nutrition as a result of artifi cial feeding and millions of children are living with one or both early discontinuation of breastfeeding – both of parents who are suffering from chronic illnesses which are among the recommended options in in extremely diffi cult conditions with little help prevention of mother-to-child transmission pro- and support. Many children experience their fi rst
11 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
impact of the epidemic with the onset of illness may not have the same broad association with in their parent or caregiver. Children, very often children’s well-being as it does in the West (Hyde, girls, are forced to shoulder new responsibilities 1993; Verhoef, 2002a). For example, Henderson such as additional domestic chores, care of sick (2003) notes that there isn’t an African term for parents and relatives, income generating activi- fostering because parenthood is understood to be ties, and childcare duties for younger siblings. potentially spread across a group of adults, rather Educational, social, economic and psychologi- than being confi ned to biological parenthood. cal problems may increase during the terminal Orphaning is increasing at a rapid rate, in phases of parental illness and, for some children, parallel with increasing adult mortality due to ironically they may be relieved after the death of AIDS, especially in sub-Saharan Africa (Bicego their parent (Gilborn et al, 2003). Overall, 12% of children in sub- et al., 2001; Kelly, Saharan Africa were orphans in 2003, with eleven The psychological and 2002; Sengendo & countries in sub-Saharan Africa having orphan mental health impact of Nambi, 1997). It is prevalence rates of 15 percent or more. In these chronic parental illness therefore important countries, up to three-quarters of orphaning was is possibly one of the to support children the result of deaths of parents from AIDS. The most poorly understood living with infected pandemic is also leading to rapid increases in the and neglected diffi culties caregivers during the number of orphans who have lost both parents, faced by children living in long period of suffer- referred to as double orphans. During 1990 to communities affected by ing severe illness, as 2010, the number of double orphans is expected HIV/AIDS in poor countries. well as during their to remain constant in Latin America and the bereavement, and Caribbean and will fall substantially in Asia. In the many adjust- the same period in sub-Saharan Africa, though, ments that will be the number of double orphans will increase from required of them thereafter. With the establish- 3.5 million to 9.6 million, representing 2.5% of ment of antiretroviral treatment (ART), the rate the child population in the region (UNAIDS/ of increase in the number of orphans is likely UNICEF/USAID, 2004). to level off and decline, with a corresponding As indicated before, children who are orphaned increase in the number of children living with are not necessarily in need of additional assistance HIV-positive parents. other than the stability, support and care provided by alternative caregivers, especially if this takes Children orphaned by HIV/AIDS: place in a close and affectionate family environ- ment (Drew et al, 1998; Foster, 1996). A study in The defi nition of an orphan used by UNAIDS/ Malawi (Cook et al, 1998) found that community UNICEF/USAID (2004) is a child under 18 years members did not view all orphans as vulnerable. of age who has lost one or both parents. Because Many praised the traditional support structures of widespread kinship care of children or foster- that enabled orphaned children to be taken in by age, in many poor countries (Ainsworth, 1996; the extended family. At the same time, however, Madhavan, 2004; Monasch & Boerma, 2004), as they described how these traditional supports well as father absence from households, this defi - were being both overburdened and broken down nition is frequently expanded to refer to a child with the increasing adult mortality rate caused by less than 18 years of age who is without a living HIV/AIDS, as well as parent available to care for them. There is concern burgeoning poverty. that the exclusion of fathers from some working The most common defi nitions of orphaning reinforces the abdica- factors affecting an … children who are tion of responsibility for their children’s care by orphan’s vulner- orphaned are not necessarily some men (World Bank & UNICEF, 2002) and ability described by in need of additional underestimates the number of orphans (Foster participants in focus assistance other than the & Williamson, 2000). Measuring orphaning in groups and ranked in stability, support and care relation to biological parenthood simplifi es the order were, amongst provided by alternative issue, but discounts the social reality of family and others: children who caregivers, especially if kin networks in many non-Western societies. In have experienced this takes place in a close these societies, children are generally recognised multiple losses of and affectionate family and reared within a web of family obligations, people, especially environment. as a result of which, care by a biological parent over a short time;
12 IMPACTS OF HIV/AIDS ON CHILDREN
orphan-headed households; children who have go to considerable lengths to maintain children lost their mother; girls; very young infants with in school, borrowing through informal networks no parents, and children with a disability. and selling assets where necessary, to keep fos- A growing concern raised particularly in tered children in school (Foster 2002a; UNICEF children’s focus groups, is property grabbing Namibia, 2001). The number of non-orphaned following the death of a parent. Guardians and children in households with orphaned children children feel victimized when relatives of the is diffi cult to calculate since few enumeration deceased person take all the valuables in the home studies distinguish between orphan and non- (including the bricks and roof of the structure), orphan children living in the same household. sometimes immediately after the funeral (Roys, In a predominantly urban area in Zimbabwe, a 1995). Teenagers were seen as being at risk due sample of 105 households was found to contain to the greater likelihood that they would drop 221 orphans and 114 non-orphans under 15 out of school to care for younger siblings. Teen- years old (Foster et al, 1995). In a rural area of age girls were also identified as being at risk Uganda, 152 households contained 383 orphans of becoming targets of sexual abuse from local and 342 other children (Monk, 2000). For every adult males due to their emotional and economic two orphans, one might therefore expect another vulnerability. Teenage orphaned boys, on the one or two non-orphans to suffer from similar other hand, were described as being more likely socio-economic deprivation. to engage in risk-related behavior, including drug use, joining gangs, and attempting suicide (Cook Other categories of vulnerable et al, 1998). It is not known whether orphans are children treated differently in families, and the research is equivocal on this point (Birdthistle, 2004; Case et The term “children in especially difficult cir- al, 2004). However, several studies indicate that cumstances” was coined by UNICEF in the some orphans feel under stress, neglected and mid-1980’s to describe the situation of particular exploited (Atwine et al, 2005; Foster et al, 1997; groups of children that went beyond poverty Makame et al, 2002). – children with disabilities, children caught up in armed confl ict and war, and exploited child Non-orphaned children living in labourers, as some examples. Since then, the households that foster orphans term has been extended to other categories of vulnerable children, including orphans and The mainstay of the response to orphaned and children directly affected by HIV/AIDS. Children vulnerable children is family fostering, a practice with disabilities, street children, children living common in many countries predating the AIDS in remote areas, working children, children in epidemic (Maharaj et al, 2000). Family fostering institutions, children living with chronically ill serves purposes of strengthening family ties by parents, and children in confl ict zonesmay all enabling children to live with aunts and uncles be considered to be vulnerable children living in who are also regarded as parents, as well as especially diffi cult circumstances. It is useful to distributing economic and other constraints consider all these groups together, because these and resources across the extended kin network conditions impact on children in similar ways (Verhoef, 2002a). HIV/AIDS has increased and the appropriate programmatic responses to unplanned and sometimes inappropriate fostering children in these conditions have a great deal in (Nyambedha et al, 2001). common. As a result of the HIV/AIDS pandemic, Poverty is exacerbated in many fostering many of these children are doubly disadvantaged. households due to increased dependency ratios, A disproportionately high number of children in and this affects the standard of living of the house- especially diffi cult circumstances are also being hold, including the prospects of non-orphaned directly affected by HIV/AIDS. Disabled children, children (Deininger, Garcia & Subbarao, 2003); for instance, are more likely to be infected with Madhavan, 2004). Children who live in house- HIV, to live with HIV-infected parents, or to be holds that foster orphans may suffer similar orphaned through the death of their parents from hardships to those experienced by orphaned AIDS, than other groups of children (Save the children (Morgan, 2000). Studies suggest that it Children, 2003; Foster 2005b). Street children is only a minority of families that treat orphans and working children are often doubly affected signifi cantly differently from their own biological in the same way (Mushingeh, 2002; FACT, 2000). children (Birdthistle, 2004). In general, relatives The HIV/AIDS epidemic worsens the situation of
13 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
all children in affected communities, but children but the situation and vulnerabilities of boys are already vulnerable from other causes become less often addressed. The age and maturity of a especially vulnerable when affected by HIV/AIDS. child also infl uences the way in which they are These groups of vulnerable children may be affected by the continuum of events occasioned exposed to additional disadvantage because the by HIV/AIDS in families and households. extraordinary levels of attention currently being Currently, the international and policy response given to so-called AIDS orphans is drawing to vulnerable children affected by HIV/AIDS is resources away from interventions that support predominantly focused on orphans. As previously vulnerable children more generally. argued, while the loss of a parent entails terrible suffering for children, in terms of programmatic Children living in communities responses, orphaned children may or may not affected by HIV/AIDS be especially vulnerable compared to their peers. While some studies indicate that orphaning AIDS is affecting almost everyone in severely (loss of one or more biological parents), results affected communities, even households without in specifi c negative effects on children, such as a HIV-infected members (Goldenberg, 1996). greater likelihood of not being in school, others Children in communities affected by HIV/AIDS suggest that deepening poverty associated with experience changes to their quality of life when the loss of productive adults is the causal link their teachers are absent from school (Baggaley et between orphaning and disadvantage (Birdthistle, al, 1997), their parents provide money to support 2004; Lindblade et al, 2003). In a recent review of sick HIV-positive relatives, when their mother national surveys from 40 countries, no differences leaves home to provide care for AIDS-ill family were found between orphans and non-orphans members living elsewhere (Kelly, 2001), and in terms of nutritional status and child work. when their household provides food, clothing or Double orphans were less likely to be in school, labour assistance to neighbours with chronically but it wasn’t possible to separate out the effects ill adults and orphans made destitute as a result because they also lived in more disadvantaged of HIV/AIDS (Foster, 2005a). CCA also suffer households than other children (Monasch & the consequences of HIV/AIDS through other Boerma, 2004). mechanisms – such as the weakening of social In collective non-Western societies where there institutions and services as teachers, health serv- is family responsibility for the care of children, the ice providers, civil servants and others become ill term orphan literally translates to a child who has or are distracted by their responsibility for sick no one to care for them (Chirwa, 2002; Giese et al, and dying relatives. As a result of these conditions, 2003a). This is synonymous with an abandoned it is estimated that some 90 percent of children child without kin, a rare and shocking condition. in Zimbabwe and in other countries with severe Programmes that target orphans in the Western HIV/AIDS epidemics have, in some way or other, sense may inadvertently label children in poten- suffered as a result of the impacts of HIV/AIDS tially damaging ways, undermine spontaneous (Catholic Relief Services, 2004). extended family care, misdirect resources to chil- While HIV/AIDS dren who might not need external assistance, and affects all children, overlook large numbers of vulnerable children it impacts girls and who are not orphans. A focus on orphans, to the Programmes that target boys differently. This neglect of other vulnerable children, is known to orphans in the Western includes the patterns be associated with the neglect and harassment sense may inadvertently of HIV infection, of children who receive special treatment from label children in damaging school attendance, external agencies, and this may be especially ways, undermine adoption, fostering, stigmatising when combined with the inappro- spontaneous extended family responsi- priate identifi cation of children as AIDS orphans family care, misdirect bilities, economic (Stein, 2003; Urassa et al, 1997). The view that resources to children who inheritance, future orphaning is the only, or even the major, problem might not need external prospects, coping of children affected by AIDS may also misdirect assistance, and overlook and behaviour. The efforts towards individualistic interventions, such large numbers of vulnerable increased sensitivity as the provision of alternative care for specifi c children who are not to gender has drawn children. However, when it is appreciated that orphans. attention to the spe- the AIDS epidemic impacts on the broader sys- cial needs of girls, tems that constitutes children’s caregiving niche,
14 IMPACTS OF HIV/AIDS ON CHILDREN
intervention efforts are more likely to be directed Figure 7. Universal curve shift to improve to support families and communities. children’s health and well-being Changing terminology to refer to children n affected by AIDS reflects an evolution in the Current Enhance system understanding of the required programmatic situation of support responses to vulnerable children. The term AIDS orphan has been discarded internationally and it is unfortunate that it is maintained in the media and in some fundraising efforts. All authoritative organizations should strongly counter the use of the term. Orphans and vulnerable children (OVC) Highly vulnerable is also being less used in favour of more general children terms such as Children Affected by AIDS (CABA). We recommend a collective term, not circumstances and limited access to services individualised to compromises their health and well-being. As All authoritative specific categories indicated in Figure 7, large numbers of children organizations, including of children – Chil- are underweight, lack basic health care and are within the health sector, dren in Communities not immunized against disease, are not enrolled should strongly counter the Affected by HIV/AIDS in school, and are engaged in child labour.1 use of the term AIDS orphan. (CCA). The concept These circumstances form the backdrop to any of children in com- additional impacts that HIV/AIDS, specifi cally, munities affected by has on children’s health and development. HIV/AIDS helps to direct assistance to strengthen- ing family and community systems, mainstream Summary efforts to help, and justifi es the integration of support work by different sectors. Children living in communities affected by AIDS What is needed is a continuum of responses – with CCA as the acronym – is a suggested to children living in communities affected by umbrella term for several specifi c categories of HIV/AIDS (see Figure 7). At the one end of the children rendered especially vulnerable as a continuum, specifi c assistance must be provided consequence of the epidemic. for extremely vulnerable children, including Very large numbers of children in southern children with severe disabilities, abused children, Africa are living with HIV/AIDS. Despite this, orphans without supportive extended family care, there is, as yet, little urgency in the response to and abandoned and street children (the shaded calls for antiretroviral treatment for children. portion of the curve on the left-hand side). In the Deaths attributable to poverty-related diseases main, though, improved access of all children in account for the extremely low life expectancy of AIDS-affected countries to health, education and children living with HIV/AIDS in sub-Saharan welfare provision is needed to shift the curve, Africa. Children with HIV infection are also likely representing the health and well-being of the child to suffer a number of diffi culties and develop- population, to the right (Committee on Evaluation mental delays that increase the burden of care of Children’s Health, Board on Children Youth, provided by families. and Families, 2004). As illustrated in Figure 7, Most children born to parents living with AIDS this shift improves the mean level of health and are uninfected. Nonetheless, these children suf- well-being of all children in the society and, fer signifi cant disadvantages. Preoccupation and simultaneously, reduces the number of extremely ill-health negatively affects parenting. In addi- vulnerable children who may need individual assistance. This approach, when applied to other 1 Between a third and a half of all children are underweight in problems, is generally found to be more cost- the regions worst affected by AIDS; by 2000, immunization effective for responding to the needs of vulnerable coverage, also as a proxy for health service access, was just above 50 per cent in sub-Saharan Africa, and less than 35 children than attempts to reach all such children per cent in the 12 poorest countries; in the same region in through individualised services. 2002–2003, the net primary school enrolment and attend- Such a “public health” response is justifi ed by ance rate was around 60 per cent (UNICEF ChildInfo); the prevalence of child labour in Africa is estimated to be the very large numbers of children in severely between 20 and 50 per cent (Andvig, 2003; Hope, 2005; AIDS-affected countries whose poor living UNICEF, 1997a; Rau, 2002).
15 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
tion, children are frequently forced to shoulder Other groups of children especially affected by new responsibilities such as additional domestic the epidemic include children with disabilities, chores, care giving responsibilities for sick par- street children, children living in remote areas, ents and relatives, income generating activities working children, children in institutions, chil- and childcare duties for younger siblings. The dren living with ill or disabled caregivers, and psychological and mental health impact of chronic children in conflict zones. Children living in parental illness is possibly one of the most poorly communities with high HIV/AIDS prevalence, as understood and neglected diffi culties faced by a result of which services and community morale children living in communities affected by HIV/ suffer, are also disadvantaged. AIDS in poor countries. Currently, the international and policy response Orphaning is increasing at a rapid rate, in to vulnerable children affected by HIV/AIDS is parallel with increasing adult mortality due to predominantly focused on orphans. Programmes AIDS, especially in sub-Saharan Africa. Children that target orphans may inadvertently undermine orphaned as a result of HIV/AIDS and/or other spontaneous family care by extended kin, mis- diseases and injuries – frequently poverty-related direct resources to children who might not need – suffer the pain of loosing their parents. However, external assistance, overlook large numbers of they are not necessarily in need of more assistance vulnerable children who are not orphans, and than other groups of vulnerable children. What prompt the neglect and harassment of children is important is that they are afforded stability, who receive special treatment from external support and care provided by alternative caregiv- agencies, especially when combined with the ers, especially in close and affectionate family inappropriate categorisation of children as AIDS environments. orphans. The mainstay of the response to orphaned What is needed is a continuum of responses and vulnerable children is family fostering, a to children living in communities affected by practice common in the southern African region, HIV/AIDS, which includes both specifi c assist- long predating the AIDS epidemic. Poverty is ance for the relatively small number of extremely exacerbated in many fostering households due vulnerable children, and improved access of all to increased dependency ratios. Children who children in AIDS-affected countries to health, live in households that foster orphans may suf- education and welfare provision. This is the opti- fer similar hardships to those experienced by mum combination of rights-based and targeted orphaned children. approaches to children.
16 Chapter3 Responses to children in communities affected by HIV/AIDS
escriptions of the impact of AIDS on children $300 million in 1996, increasing to $1.7 billion in Din Africa fi rst appeared in conference and 2002 and $4.7 billion in 2003 (UNAIDS, 2004b). research papers in the late 1980’s (Beers et al, In 2003, funding for orphans and vulnerable chil- 1988; Ankrah, 1993; Barnett & Blaikie, 1992; dren (OVC) in severely affected African countries Hunter, 1990; Preble, 1990a; 1990b; UNICEF, was $200-$300 million, whilst resources needed 1990). Academic articles provided estimates of the for a response to children were estimated to be future scale of the orphan epidemic and described $600 million in 2004, increasing to $2 billion by community-based assistance programmes (Bos, 2007 (Guttierrez & Bertozzi, 2004). The World 1991; Chin, 1990; Hunter, 1990; Preble, 1990a, Bank initiated its Multi-Country HIV and AIDS b). WHO and UNICEF were instrumental in dis- Programme for Africa (MAP) in 2000 and, by seminating research, documenting the problem, 2004, had approved projects worth $1 billion. analysing responses and proposing remedies One half of funds were for non-government use. (UNICEF, 1990; WHO, 1990; WHO/UNICEF, It is stated that MAP works with 30,000 commu- 1994). However, these early writings did not nity-based organizations and has built fi nancial translate into concerted international action. Dur- systems to enable one half of its resources to ing the 1990’s, the problem of children affected go directly to the community (Cashel, 2003; by AIDS had a low priority in UN agencies, Wolfensohn, 2004). development organisations, international NGOs The Global Fund, established in 2002, and research bodies. Rather, it was local groups approved proposals totalling $3 billion and and organizations that developed programmes made disbursements worth $700 million, with to support vulnerable children, and who called 56 per cent allocated for HIV/AIDS. Some 16 of attention to the worsening situation of children 82 proposals identifi ed vulnerable children as a living in communities affected by AIDS (Foster, target group but only eight provided a strategy 2002a). for providing support to vulnerable children. In 2004, the Global Fund recognized that children International responses to children in affected by AIDS were not receiving the attention communities affected by HIV/AIDS they deserved and announced that one million orphans would be targeted through its funding International responses to children affected by systems (Save the Children, 2004a). In 2003, AIDS started to change with the publication of the United States government announced a fi ve- Children on the Brink by the US Agency for Inter- year plan to provide care for ten million people national Development. Hunter and Williamson affected by HIV/AIDS. Of the $15 billion budget, documented the scale of the impending orphan ten percent was intended to help children affected crisis and proposed intervention strategies (1997). by HIV/AIDS, with half the allocation to be chan- In 1998, the United States administration com- nelled through non-profi t and faith-based organi- mitted additional resources for an expanded zations (Otterman, 2003). In 2004, the British international HIV/AIDS response, singling out Government increased its funding for HIV/AIDS the impact of AIDS on children for special atten- to £1.5 billion (about $2.8 billion) over three tion. years, with ten per cent to be spent on responses During the past decade, international sup- to the needs of orphans and other children made port for HIV/AIDS responses has signifi cantly vulnerable by HIV/AIDS (DFID, 2004). increased, with fi nancial resources being ear- Based on Children on the Brink, several inter- marked to assist children and their families. national agencies commenced a consultative HIV/AIDS funding for poorer countries totalled process in 2000 that led to the publication of The
17 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Framework for the Protection, Care and Support of lenge of children affected by AIDS, implementing Orphans and Vulnerable Children Living in a World a national action plan for vulnerable children, with HIV and AIDS (UNAIDS/UNICEF/USAID, and instituting monitoring activities based on 2004). The Framework provides a broad range of indicators measuring the well-being of orphans stakeholders from all sectors of society with a set and vulnerable children (UNAIDS, 2004b). Only of strategies to improve the care and protection of a minority of countries with signifi cant HIV epi- vulnerable children, and it is adopted as a central demics have national polices for the protection of aspect of the analyses and recommendations of orphans and vulnerable children. By 2003, among this review. the 21 countries in east and southern Africa, only Poverty Reduction Strategy Papers (PRSPs) and Malawi, Rwanda and Zimbabwe had national National Strategic HIV/AIDS Plans (NSPs) provide OVC policies, though policy development was in indications of the importance national policy progress in four other countries (UNICEF, 2003). makers attach to issues such as the relationship The recent UNICEF-led Rapid Assessment, Analy- between HIV/AIDS and poverty, the role of com- sis and Action Planning (RAAAP) process assisted munities, and the support of orphans and vulner- the development of multi-sectoral National Plans able children. PRSPs were introduced in 1999 of Action on vulnerable children (NPAs) in 16 to support national efforts to formulate effective sub-Saharan African countries. Translating the growth and poverty reduction strategies. By mid- NPAs into actions that benefi t vulnerable children 2004, PRSPs were implemented in 42 countries will be diffi cult without properly scaled imple- including 21 in sub-Saharan Africa. Most PRSP mentation plans, as well as the commitment of countries also have NSPs. An analysis of African government to prioritise vulnerable children and PRSPs found that only Tanzania and Madagascar to provide additional resources. In several coun- considered HIV/AIDS interventions as a key ele- tries, the RAAP initiatives were limited by the lack ment in the fi ght against poverty. Around half of of involvement of civil society organizations, the NSPs, and hardly any PRSPs, mentioned funding main implementers of OVC activities. mechanisms. This is an important shortcoming in view of the need to provide resources for The Framework for the Protection, vulnerable children at the community level. The Care and Support of Orphans and vulnerability of children was mentioned in only Vulnerable Children Living in a one-third of PRSPs and NSPs in Africa, with World with HIV and AIDS only Senegal includ- ing an intervention As described earlier, a consultative process, begun targeting this group. in 2000, culminated in the publication of The Until now, most No countries budg- Framework for the Protection, Care and Support of interventions to support eted for activities to Orphans and Vulnerable Children Living in a World children have been care for and support with HIV and AIDS (UNAIDS/WHO/ UNICEF/ piecemeal and have not children, suggesting USAID, 2004). The Framework, which builds on matched the size of the that even where the a series of reports entitled Children on the Brink problem. Urgent steps issue was identifi ed, (Hunter & Williamson, 1997; 2000; UNAIDS, to scale up and replicate there was high risk WHO, UNICEF, USAID, 2004) provides a broad successful interventions of policy slippage range of stakeholders from all sectors of society are needed. with interventions with a set of prioritised strategies to improve the for children falling care and protection of vulnerable children. The off poverty reduction Framework is advanced against the background of agendas prior to their implementation (Bonnel et what is known about efforts to provide care and al., 2004). protection to vulnerable children, and is based Until now, most interventions to support on lessons learned over nearly two decades of children have been piecemeal and have not experience in the fi eld of HIV/AIDS. The strategies matched the size of the problem. Urgent steps to proposed were subject to numerous consulta- scale up and replicate successful interventions tions, and the publication is a consensual docu- are needed. To do this, a number of steps are ment, endorsed by 32 of the major agencies and required, including conducting a participatory organizations working in the fi eld of HIV/AIDS, situation analysis, implementing a national policy and widely accepted by groups working with for vulnerable children, establishing a national vulnerable children. As a whole, the program- coordination mechanism to respond to the chal- matic implications of the Framework are intended
18 RESPONSES TO CHILDREN IN COMMUNITIES AFFECTED BY HIV/AIDS
to benefit children’s health and psychosocial children made vulnerable by the AIDS epi- well-being. The Framework is the authoritative demic. This is especially true of households document on responses to children living in com- headed by women and the elderly, who are munities affected by HIV/AIDS, and the health already on the edge of poverty; sector should use the ● Interventions to benefi t vulnerable children Framework to struc- should be integrated into other programmes ture its approach As a whole, the to promote children’s welfare and reduce to supporting the programmatic implications poverty; of the Framework are healthy development ● intended to benefi t children’s of children living in A much larger number of children than health and psychosocial communities affected orphans are vulnerable to the impact of HIV/ well-being. by HIV/AIDS. AIDS, as a result In June 2001, at of poverty, armed the United Nations confl ict and child Few resources are Special Session on labour. For this reaching families and HIV/AIDS, countries resolved that, together with reason, interven- communities who are partners, they would: tions should be providing the front-line directed to all vul- By 2003, develop and by 2005 implement response to provide care and nerable children. national policies and strategies to: build and protection for children made Targeting children strengthen government, family and community vulnerable by the AIDS living with HIV/ capacities to provide a supportive environment epidemic. This is especially AIDS or orphaned for orphans and boys and girls infected and true of households headed as a result of affected by HIV/AIDS, including by providing by women and the elderly, AIDS exacerbates appropriate counselling and psychosocial sup- who are already on the the stigma and port; ensuring their enrolment in school and edge of poverty. discrimination access to shelter, good nutrition, health and against them. social services on an equal basis with other children; to protect orphans and vulnerable The Framework sets out fi ve key strategies: children from all forms of abuse, violence, 1. Strengthen the capacity of families to pro- exploitation, discrimination, traffi cking and tect and care for orphans and vulnerable loss of inheritance. children by prolonging the lives of parents The UN General Assembly Special Session on and providing economic, psychosocial and Children (‘A World Fit for Children’) reaffi rmed other support. both the Millenium Development Goals and the The rationale for this is that family relationships 2001 Special Session goals specifi cally established provide the most immediate source of support for children affected by HIV/AIDS. While the for children, and even street children tend to international community appreciates the depth of retain links with their families. “Families are the problem, responding to the crisis of children the best hope for vulnerable children” (p. 15). living in communities affected by HIV/AIDS is not The Framework notes, in accordance with the yet seen as a global priority. The Framework is an recommendation made in this review, that efforts attempt to take these declarations one step further to address psychosocial needs do not necessar- and to lay out a common set of strategies to be ily require separate programmes, but can be achieved by the concerted effort of all partners. incorporated into other activities. In addition, The Framework draws attention to a number the Framework urges that “a particular emphasis of shortcomings in programming approaches to must be placed on integrated early development date: of children of preschool age, especially through efforts that focus on food and nutrition, health ● Little attention is given to vulnerable children and development, psychosocial needs, day care in most national development agendas, and and other key areas” (p. 17). government leadership, coordination and facilitation has, to date, been weak. 2. Mobilize and support community-based ● Few resources are reaching families and com- responses. munities who are providing the front-line Given the scale and multidimensionality of the response to provide care and protection for response needed, leaders and community groups
19 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
need to take action to support and protect vulner- communities affected by HIV/AIDS, local activities able children. The processes begin with people began to emerge to assist vulnerable children and being more open and accepting about HIV/AIDS, their families. Some of these arose spontaneously organizing and assisting cooperative activities, as concerned community members acted together and encouraging and supporting community care in faith-based and other social groups to provide for children without family support. help to affected neighbours, while others were prompted by professionals working in the fi eld. 3. Ensure access for orphans and vulnerable Community-based organizations were formed to children to essential services, including organize, fund and extend these responses, and education, health care, birth registration, international humanitarian agencies, including and other services. Redd Barna, Save the Children (UK), World Essential services are necessary for children’s Vision and Terre des hommes supported these welfare and lack of access is a key component of early initiatives. children’s vulnerability. Article 65 of the Declara- In 1994 WHO and UNICEF pulled together tion of Commitment of the UN Special Session on lessons learnt from promising programmes HIV/AIDS specifi cally calls for increased access around the world, noting that the pandemic was to essential services for children living in com- giving rise to a host of problems for children, and munities affected by HIV/AIDS. Comprehensive that responses would have to take account of the local action plans are necessary to meet the service fact that the countries most affected by HIV/AIDS delivery needs of families and communities. were also those simultaneously challenged by poverty, war and confl ict, and natural disasters. 4. Ensure that governments protect the most Since that time, a number of international organi- vulnerable children through improved zations, including AXIOS (2001), Family Health policy and legislation and by channelling International (2001), the Interagency Coalition on resources to families and communities. AIDS and Development (2002), the International While the Framework recognises that no ministry HIV/AIDS Alliance (2000), Save the Children has sole jurisdiction over the issues surrounding (2003, 2004b), UNAIDS/UNICEF/USAID (2004), children living in communities affected by HIV/ UNICEF (2004), USAID (2000, 2001, 2002, AIDS, it urges that “Governments must fi nd ways 2003, 2005), the World Bank (1999), World to bring together ministries of education, fi nance, Bank/UNICEF, (2004) and World Vision (2002) health, social welfare and others to respond in have drawn together programming experience a coordinated and effective way to the many and research fi ndings to enable lessons to be needs of children” (p. 24). Especially important learnt, progress to be made, and the scale of the are creative ways to strengthen social safety nets response expanded to rise to the enormity of the and to ensure that resources reach communities. effects and the long duration of the impact of the “Governments need to establish more cohererent AIDS epidemic on children.. systems and mechanisms that enable funds from Concern, however, has been growing around multiple donors and sources to be channelled to the role of external organizations, and the need affected communities” (p. 25). to fi nd ways to ensure that these agencies sup- port, rather than undermine, the emergence and 5. Raise awareness at all levels through sustainability of community-based activities. The advocacy and social mobilisation to create importance of fi nding the right balance between a supportive environment for children and direct external activities and local response is not families affected by HIV/AIDS. unique to HIV/AIDS, but the scale and urgency of This is especially important to reduce fear, igno- the problems generated by the HIV/AIDS epidemic rance, denial and stigmatisation of those most can lead to ill-planned actions by external agen- affected by the epidemic. cies with unanticipated negative consequences. External agencies may divert the agenda of community actions; inappropriate targeting may Non-governmental and community- leave vulnerable groups unsupported and cause based organizations resentment; material support from the outside International organizations may have the effect of disrupting community actions or relieving families and communities of Well before multinational agencies became a sense of responsibility; and communities may involved in programmes to support children in be left worse off when programmes are terminated
20 RESPONSES TO CHILDREN IN COMMUNITIES AFFECTED BY HIV/AIDS
Community-based Options for Protection and Empowerment (COPE) COPE, a community mobilization programme to by the Malawian Government and UNICEF, as ameliorate the impact of the AIDS pandemic on the modus operandi for implementing their the lives and welfare of children and families, was programmatic strategy. CAC’s co-ordinate both established in 1995 with assistance from Save the HIV/AIDS care and prevention activities at sub- Children (US) and, in 1997, from the US Agency district level and these, in turn, are supported for International Development (USAID)/Displaced and monitored by the District AIDS Coordinating Children and Orphans Fund (DCOF). Committee (DACC). CACs are responsible for the mobilization, monitoring and support of Village COPE began its efforts by sensitizing religious, AIDS committees (VAC’s) in all villages in the CAC business and political leaders to the reality of catchment area. Through committees, COPE the impact of AIDS on the community, and to implemented a broad range of interventions. They initiate the formation of community care alliances. identifi ed orphans, ill people and other vulnerable These alliances jointly assume responsibility people; assisted the return and reintegration for addressing the broad range of problems of orphans to school; trained caregivers in the experienced by communities. Part of COPE’s skills required for home-based care; started approach was to strengthen the capacity of youth Anti-AIDS clubs; planned and organised partnerships, to mobilise internal resources, recreation activities to address the psychosocial to access external resources and to organise needs of orphans, and developed community community involvement. Area AIDS Committees gardens to produce food and income for the mobilised action at the village level by bringing benefit of vulnerable households. Chiefs and people together to address their concerns. well-to-do members of the community donated COPE was reviewed by DCOF in 1996, 1998 and land for cultivation, and COPE staff assisted 1999 with a range of recommended changes the committees with training in agricultural proposed on each occasion. Initially COPE’s practices. focus was on problem solving and service In 1997, COPE expanded from 16 VACs to 208 provision, but this proved to be too costly. COPE VACs with 4 420 members. More than 12 600 considered their initial programmeme activities enumerated orphans received material assistance to be community-based because volunteers and food; more than 150 woman heads of carried out many of the activities. However, households were in enterprise networks, 735 ongoing participation of volunteers depended on youth received vocational skills training, more continuing involvement of a large number of NGO than 11 000 families benefi ted from agricultural staff and material benefi ts from the programme. inputs. In terms of training, 449 people were Once COPE staff moved on to work in another part trained in caregiving and community-based of the district, volunteers did not always continue child care, 807 people received home-based their work. In addition, COPE employed a complex care training, and 6 577 people received HIV/AIDS information gathering and monitoring system prevention training. A total of 248 967 people that was thorough, but very labour intensive and benefi ted directly or indirectly from the COPE expensive. After the fi rst evaluation, COPE cut programme at an annual cost of $317 000. costs by reducing staff, and by redirecting efforts into community mobilization. Its principal activities A significant lesson learned by COPE is that were seen in a positive light by communities, their fragmented and compartmentalised programmes leaders, government personnel and NGO staff. are less effective in assisting families affected by For example, patients in homes with trained HIV/AIDS than programmes that are integrated. care-givers were found to be receiving better HIV prevention efforts also appear to be more care, to be more comfortable, and to live in effective if integrated with activities to care for greater dignity. However, because the COPE those living with AIDS, orphans and other groups activities appeared to be too costly to maintain, affected by the pandemic. The integration of alternative approaches were introduced. COPE programmes through community mobilisation started to use the Community AIDS Committee increases social cohesion, which is believed also (CAC) concept, an idea that was initially devised to reduce infection rates.
21 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
because spontaneous initiatives did not develop responded with ingenuity. Community groups or were suspended (Grainger, Webb & Elliott, in Africa do not commonly establish children’s 2001). This does not mean that external support homes or institutions for vulnerable children, is not needed. Also, these cautions do not mean if this is not prompted by external infl uence. that an emphasis on community-based initia- African communities view what is happening to tives relieves governments of the responsibility children as one of the most important impacts to create an enabling environment for children of the AIDS epidemic (Bolton & Wilk 2004). As and families, including unencumbered access to early as 1987-91, communities in Tanzania were essential services, as well as additional fi nancial noted to be responding to increasing numbers and infrastructural support where needed (Foster, of orphans and families affected by HIV/AIDS. 2005a). Those affected were provided with home-based care, food, educational support and health care Local organizations assistance (Mutangadura et al., 1999; World Bank, University of Dar es Salaam, 1993). Large, in-country NGOs now also exist to provide In all affected countries there are spontaneous assistance to children and families, and some of community-based initiatives, devised by local them have become intermediaries for channeling communities to help vulnerable children and international and national funds to smaller com- families. These initiatives include: communal munity-based organizations. For example, the land and crop production; grain loan schemes; Family AIDS Caring Trust (FACT) in Zimbabwe, organized individual or group income generating the Nelson Mandela Children’s Fund (NMCF) in activities (IGA), often involving small trade selling South Africa, the Kenya Orphans Rural Devel- home-made food or vegetables; communal labour opment Programme (KORDP) in Kenya, and to repair houses and schools; home-based care Community-Based Options for Protection and for ill people and their families; labour sharing Empowerment (COPE) in Malawi. to relive carers and to enable children to attend The emergence of community-based care school; community schools; orphan registration initiatives has become one of the outstanding and home visiting programmes to provide relief features of responses to the epidemic. They play food, clothing, and school fees; social groups a key role in easing the impacts of the epidemic, particularly on children. Although most initia- tives are operated by community organizations, Community Grain Banks religious groups or non-governmental organisa- in Burkino Faso tions, their effective- ness often depends In Burkina Faso, community grain banks on the existence of have become popular, providing a village- The emergence of formal health and based solution in times of food shortage. community-based care education services Communities must decide to establish a grain programmes has become one and other govern- bank themselves and elect a committee to of the outstanding features ment structures. manage it. They build their own grain banks of responses to the epidemic. In the past, there and are provided with credit and training in They play a key role in was no special purchasing, managing money and record easing the impacts of the need to consciously keeping, to enable them to control their own epidemic, particularly respond to vulnera- food security. After harvest time, community on children. ble children. Instead, groups buy grain at best prices in nearby families looked after markets and stock the bank, which then the children of kin makes food supplies available at the hardest and support was provided to households caring times of year at carefully controlled prices to for vulnerable children through existing com- the most needy households. Management munity safety net mechanisms (Foster, 2005a). by women’s committees appears to be the During the 1990s, though, a completely new most successful, because women tend to be component of the community safety net devel- more transparent in fi nancial affairs and have oped in response to the impact of HIV/AIDS. better skills in management of food supplies, Over the past decade, thousands of communi- especially in times of crisis. (Yameogo, ties throughout Africa have recognized the 1997). increasing vulnerability of children and have
22 RESPONSES TO CHILDREN IN COMMUNITIES AFFECTED BY HIV/AIDS
for vulnerable children; activities to address the affected by AIDS than external agencies such as psychological distress of affected children, and NGOs, and even government. The multitude of a variety of other efforts that give succour and initiatives that continue to spring up runs con- support to those who are worst affected by the trary to the oft reported assertion that families and epidemic. communities with severe epidemics are breaking These activities may be driven by local groups, up. However, these activities are usually not such as faith-based communities but frequently sustainable in the long-term without additional also by the charismatic leadership of one or more assistance. While people volunteer their time, concerned individuals. The cumulative impact of they can only do so when the demands of their large numbers of local initiatives is signifi cant. own households permit them to give assistance In the long run, affected communities are better to others, and they seldom have the resources to placed to directly provide appropriate support continue to provide material support to affected and deal with complex social issues of children children and families except in crisis situations. For this reason, getting manageable resources to community-based groups to enable them to con- Support Groups for People Living with tinue to assist vulnerable children and their fami- HIV/AIDS in Zimbabwe lies is the critical requirement of governments, as well as international and local aid agencies. A study from Zimbabwe provides an overview Subbarao and Coury (2003) have summarised of what is fairly typical of HIV/AIDS support approaches to community-based interventions groups elsewhere in Africa. The study surveyed and note a number of 150 support groups with 2 509 members. challenges faced by Two-thirds of the groups were in rural areas these programmes. and over a third were formed in the previous To date, most ini- The cumulative impact year. Two-thirds of the groups were small, with tiatives have been of large numbers of local 5-15 members, and there was no difference in sporadic and piece- initiatives is signifi cant. size between newly formed and older groups. meal, rather than Most groups were actively recruiting new well-funded national members. Though membership was open programmes; there are few well-documented to everyone in the community affected by success stories to inform the sustainability of HIV/AIDS, most support groups consisted of programmes; most programmes are run by vol- women and nearly half required a membership unteers without the expertise to evaluate their fee. About one-third of the groups were hosted efforts or to conceive their activities on a larger by an NGO or a hospital, mostly faith-based scale; and there have been few developmental organizations. The majority of the groups interventions (for example, that focus on income (90%) were affiliated, most of them with generating activities) in comparison to the large ZNNP+, the national network body for PLHA, number of programmes which attempt to provide and the survey probably under-represented direct assistance to orphans and vulnerable independent support groups. The main children. This means that few community-based source of revenue for support groups was efforts have been thought through to scale. What membership fees; only fi ve groups received is needed is for efforts at the two extremes of the external funding. Two-thirds of groups had an continuum to be strengthened. Firstly, this needs annual budget and this was under Z$10,000 to be done at a macro-level with government (US$250). All relied exclusively on volunteers assistance through health, education and other and the main aim of the groups was to serve services generally thought of as the social wage, group members and help them live positively. together with efforts to scale up promising com- The commonest reason for joining a group munity-based activities. At the other extreme, was participation in income generating greater local philanthropy, mobilisation and activities, followed by access to counselling, organizational capacity needs to be drawn in, participation in public education, access to especially amongst better-off members of com- material support and home care. The failure munities, such as shopkeepers, professionals, rate of income generating projects was high, and entrepreneurs, to support the efforts of local most commonly because of lack of access to volunteers to assist kith and kin. capital (Southern African AIDS Trust, 1999. One of the major challenges facing efforts by international and local governments, donors and
23 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
and informal community initiatives. Based on Mutual self-help groups in Uganda a recent review of funding approaches, Foster (2005a) identifi ed a number of bottlenecks at Munno Mukabi refers to informal mutual several levels of disbursement and recommended self-help groups, a traditional practice that is that mechanisms be put in place to direct manage- seeing renewed popularity as a result of the able amounts of money to small organizations and impact of AIDS. One such group helped look community groups, as well as to track what pro- after 102 orphans staying with very elderly portion of the large relatives or on their own; the groups enable tranches of available participants to engage in social and economic HIV/AIDS funding support activities as well as recreation. reaches communi- One of the major These associations are particularly useful in ties and directly challenges facing efforts responding to periodic but unpredictable risks benefi ts vulnerable by international and local related to death, sickness, and celebrations children and their governments, donors and that can impose signifi cant fi nancial pressure families. As Alison philanthropic organizations on households (Wright et al. 1999; Moyo Dunn notes (2005b), to assist vulnerable children et al. 2002). Informal women’s counselling “Most advocacy and is the development of groups and impromptu meetings have campaigning effort mechanisms for channelling sprung up, where women assist each other goes into boosting resources to grassroots in the plantations, caring for the sick and the amount of HIV/ organizations and to relieving caregivers. Neighbourhood women AIDS money made destitute families. appear unannounced to weed and trim the available. Yet lit- banana gardens of a woman who is ill. The tle effort goes into women have persuaded local Resistance deeper questioning Councils to solicit outside help for orphans and analysis of how funding is currently being and some have assumed the responsibility of spent and whether it is effective (p. v). caring for children in their homes. Informal counselling sessions enable women to share their experiences and concerns (Barnett & Faith-based organizations Blaikie, 1992). In some districts in Uganda, During the late 1990’s, community responses village residents’ mutual assistance groups are to vulnerable children proliferated, especially compulsory for all adults. These groups are amongst faith-based organizations (FBOs). In currently the most widespread and effective of 2002 and 2003, research teams in Kenya, Malawi, all groups, though they are plagued with poor Mozambique, Namibia, Swaziland and Uganda management and a low capital base (Kasente surveyed what religious groups were doing to et al., 2002). meet the needs of orphans and vulnerable chil- dren (see Table 1). Interviews were conducted with 690 faith-based organizations, mostly philanthropic organizations in their attempts to churches, mosques and religious coordinating assist vulnerable children, is the development bodies. The scale of the response was staggering of mechanisms for channelling resources to – over 90 per cent of surveyed religious groups grassroots organizations and to destitute families. engaged in activities to support orphaned and Large-scale international assistance often has had vulnerable children. Over 9 000 volunteers sup- disappointing results and, increasingly, donors ported more than 157 000 vulnerable children are recognising that the most sustainable and in 397 faith-based initiatives. More than half cost-effective efforts to protect, support and assist of the initiatives established by congregations orphans and other children made vulnerable by were started in the preceding four years. These AIDS are those that are carried out by grassroots responses were prompted by the growing num- community groups (Williamson et al, 2001). bers of children going hungry, without adequate Grassroots organizations can be overwhelmed clothing, not attending school, lacking spiritual when they receive too much funding too quickly or parental guidance, or subject to exploitation, without parallel increases in management capac- abuse, rape or unwanted pregnancy. Though the ity. On the other hand, donors have no mecha- precipitating factor for most community responses nisms for channelling small amounts of money is the growing number of orphaned children, in keeping with the needs and capacity of CBOs around one half of the children supported by
24 RESPONSES TO CHILDREN IN COMMUNITIES AFFECTED BY HIV/AIDS
Table 1. Community-based child and family support activities of faith-based organizations
Type of response % FBOs Description of responses Religious education 90+% Spiritual support to families and children through scripture reading, religious and spiritual support instruction, prayers, singing and encouragement to attend worship. School assistance 73% School fees, levies, uniforms, equipment, books and boarding fees Material support 62% Essential material support such as food and clothing to individual children from destitute households HIV prevention 51% Increased awareness of HIV and moral guidance for children. Visiting / home care 39% Identifi cation of needy households, regular visits, parenting, advice, household supervision, meal preparation, dwelling maintenance, assistance in household agriculture or income generation, and home care supervision for HIV/AIDS patients Psychosocial support 32% Counselling to children; psychosocial support group activities, experiential learning Medical care 30% Facilitate children’s access essential medical support through the provision of medical fees, medicines and transport costs. Income support and 19% income-generating projects to produce food and cash; preparation and generation distribution of school uniforms; agricultural projects at various levels to increase output; labour sharing; credit schemes for funeral benefi ts Vocational training 15% Apprenticeship and training in marketable skills for orphaned adolescents; nutrition gardens, husbandry projects, manufacturing co-operatives, buying-and-selling initiatives, carpentry, dressmaking. Day care centres 11% Care and food during the day for pre-school children, often whilst caregivers are working to enable women to work in or outside the home Community schools 5% Non-formal education facilities for out-of-school children. Fostering promotion. 3% Encourage fostering and adoption by non-relatives of orphans
religious congregations were vulnerable children initiated and sustained. There is also a rationale, other than orphans, most of them destitute. Many beyond lack of resources, for volunteer work. faith-based programmes are small-scale, support- Lynette Mudekunye (2002) points out that FBOs ing fewer than 100 vulnerable children, although have a number of inherent qualities that make some groups support over 1,000 children and them particularly effective conduits for com- most initiatives were expanding (Foster, 2004; munity based care interventions. For example, 2005a). FBO’s are able to identify vulnerable and needy The organizational capacity of congregations in children through their members in communities; terms of governance and fi nancial accountability refer children on to other services, and assist in was on a par with many larger NGOs. But few the distribution of emergency relief to children; received signifi cant external technical or fi nancial play a signifi cant role in reducing stigma and support and, of necessity, were forced to rely on discrimination through a spirit of acceptance of their own resources and skills. Many congrega- those who are infected and affected by HIV/AIDS; tions indicated their only source of support was offer support to caregivers (who are generally contributions by members of their congregations. female, elderly or very young, poor, and/or ill); This refl ects the motivation of religious groups and FBO members can visit children and families, who commit their own time and resources to and actively discourage abuse by caregivers and ensure the future well being of vulnerable chil- neighbours. They can also act as signifi cant adults dren in their communities. in children’s lives. The success and effectiveness of numer- The potential of the religious sector in sup- ous faith-based projects operating in Africa is porting orphans and vulnerable children has attributed to the fact that care and compassion not been fully realized. One reason is an anxiety for vulnerable people is intrinsic to religious amongst funders about the conservative agenda of doctrines. Religious bodies are an integral part of right-wing religious groups in the United States. community infrastructure, and provide a coher- However, the potential for expansion is enormous. ent social network within which projects can be There are some quarter of a million congregations
25 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
absorb orphaned and affected children as long as Families, Orphans and Children their meagre resources hold up (Family Health Under Stress (FOCUS) International, 2001). In the main, surviving mothers and related women provide most of the FOCUS is a a project working with church care for affected children. While surviving fathers groups in Zimbabwe initiated by FACT (Family are less likely to care for children than surviving AIDS Caring Trust), Zimbabwe’s oldest and mothers, this tendency seems to be changing longest running AIDS service organization. The (Case et al, 2002). In most settings, grandparents main aim of FOCUS is to assist communities are the most common caregivers. to care for orphans by identifying orphaned Community-based approaches focus on assist- children; assessing and prioritizing those in ing adult caregivers to support very vulnerable greatest need (children living without adult children on the assumption that children are supervision, withdrawn children, children dependent on adults, being cared for by a terminally ill caregiver, and family caregiv- children in rags, children in homes where ers will continue to Extended families, kin there is clearly no food, or no sign of food provide protection preparation, etc); visiting the most needy; and communities remain and care for children the principal supports for establishing partnership and co-operation when programmes with other community groups, leaders and children affected by HIV/ fail or pull out. How- AIDS in sub-Saharan Africa. organizations; increasing sustainability by ever, more family or limiting provision of material support, and informal fosterage is encouraging maximizing community resources occurring as a result where possible. of necessity and children are often pushed into FOCUS has been found to be a low cost project households, rather than being pulled, and this with high levels of community ownership, makes children vulnerable (Subbarao & Coury, requiring a minimum of external support, 2003). In addition, older caregivers may have dif- effective in reaching the poorest of orphan fi culties responding to the economic, health and households, and replicable. An evaluation psychological needs of children, and households and best practice analysis found that in in which very old caregivers have responsibility for 1999, seven FOCUS sites reported having children may suffer severe resource constraints. made 93 000 visits to 2 170 households with In addition, grandparents themselves will die, a population of about 6 500 orphans and leaving children who have already experienced vulnerable children, and 992 children’s were multiple losses. Child-headed households are able to attend primary school because their reported to be increasing, but there are signifi cant school levies (between $2 and $4) were being problems with available measurement and data paid (Lee et al, 2002). (Desmond at al, 2003). While child-headed house- holds are often referred to as a sign of community and family disintegration, closer examination of these households frequently indicates that their in the AIDS belt of east and southern Africa existence is testimony to community and neigh- (Foster, 2005c). In spite of the crisis, a majority of bourhood assistance, as such households could congregations have probably not yet established not survive on their own (Germann, 2005). any responses to vulnerable children. Family structure and function is changing as a result of the HIV/AIDS epidemic (Ankrah, 1993; Caldwell et al, 1993). Emerging family forms Family responses to children in include families with fostered children of kin; communities affected by HIV/AIDS elderly household heads with young children; Extended families, kin and communities remain large families with unrelated (fostered or adopted) the principal supports for children affected by children; single-parent households; child-headed HIV/AIDS in sub-Saharan Africa (Foster, 2005b; households; formal or informal cluster foster care; Masmas et al, 2004; Ntozi et al, 1999; Webb, and itinerant or homeless families (Hunter & Wil- 1996). In rural Tanzania, for example, 95% of liamson, 2000). All these family forms need to be orphans are taken care of by relatives (Urassa supported because they provide care for vulner- et al, 1997). Studies in many countries in Africa able children and other dependent members. and elsewhere fi nd that families and communities The fact that families are absorbing the care
26 RESPONSES TO CHILDREN IN COMMUNITIES AFFECTED BY HIV/AIDS
of affected children, ● Improve adult-to-child communication The fact that families does not mean that and provide counselling on diffi cult issues, are absorbing the care of they are doing so including parental illness, parental death, affected children, does not without difficulty and sex education. Many parents and guard- mean that they are doing so (Rutayuga, 1992). ians express a need for support and advice without diffi culty. In private, observes on discussing diffi cult issues with children, Susan Hunter, some including disclosure of the adult’s HIV status guardians express (Faithfull, 1997; Gewirtz & Gossart-Walker, dismay at having to 2000; Thorne, Newell & Peckham, 2000). restart families late in their lives, both in terms of ● Address the critical material needs of AIDS- their loss of personal freedom and in their anxiety affected households, including those headed about meeting the needs of small children fi nan- by HIV-positive parents and guardians. This cially, physically, and emotionally. They are also can be done through income-generation activi- frustrated by the behaviour problems of children ties, vocational training, food, clothing, home and young people who have been traumatised by repairs, and school fees. the sequence of events surrounding their parents’ deaths. The adults may be traumatised themselves ● Improve the morale of children affected by by repeated deaths within their families (Hunter HV/AIDS by keeping children in school and & Williamson, 2000). offering sports and recreation facilities. School An operations research study in Uganda looked and other activities maintain the psychological at how to achieve maximal programme benefi ts well-being of children and reduce the burden for vulnerable children. The results drew atten- of childcare on stressed caregivers. tion to the fact that adult caregivers, parents and ● Address stigmatisation of and discrimination guardians, have needs of their own that must be against AIDS-affected adults and children. Fear addressed to enable and prolong their capacity to of disclosure limits parents’ ability to appoint care for children affected by HIV/AIDS (Gilborn et guardians and to take other steps to secure al, 2001). This study recommended the following the future of their children. Strategies include broad principles to include in caregiver support communal monitoring to reduce mistreatment programmes: of children and AIDS-affected households, ● Reach children affected by AIDS before they including teasing, gossip, neglect and abuse. become orphans and enable people living with Out-of-pocket spending by households, most of AIDS to discuss and address their concerns whom are already very poor, is the largest single about the future welfare of their children. component of overall HIV/AIDS expenditure ● Increase community awareness and account- in African countries, a stark reminder that the ability about the property rights of women and economic burden is borne by those least able children. This is especially important because to cope. Households are straining under this most surviving caregivers are women, and a weight of sickness and death, with extended substantial proportion is young. Efforts to pro- families and commu- mote the writing of wills must be accompanied nity members taking by commitments by relatives and community up the responsibility School and other activities leaders to uphold property rights. Community to support children maintain the psychological groups and local leaders (government, tradi- made vulnerable by well-being of children tional and spiritual) must be mobilised to help HIV/AIDS (Seeley et and reduce the burden enforce property rights. al, 1993). It is clearly a case of the very of childcare on stressed ● Address the critical health needs of adult car- poor helping the caregivers. egivers, including guardians (Linsk & Mason, destitute. Despite 2004). Care and support services need to be the proliferation of provided to caregivers to maintain their health HIV/AIDS resources, and prolong their capacity to care for children. international responses to the HIV/AIDS crisis are This minimises the toll of illness and death on failing to get resources to affected communities children, improves their well-being and access and families. It is imperative that new ways be to school, and delays their primary, secondary found to reduce the share of total AIDS spending or tertiary orphaning. by the poor. The priority question for govern-
27 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
ments, international agencies and others is how children with other programmes to promote to ensure that available and new resources for children’s welfare and reduce poverty HIV/AIDS, including for children, can best be The emergence of community-based care initia- disbursed in order to build the capacity of affected tives has become one of the outstanding features communities and households and directly benefi t of responses to the epidemic. They play a key role vulnerable children (Foster, 2005a, b). in easing the impacts of the epidemic, particularly on children. Although most such initiatives are Summary operated by community organizations, religious groups or non-governmental organisations, their International responses to children affected by effectiveness often depends on the existence of HIV/AIDS have been late in development. Notable formal health and education services and other publications such as Children on the Brink in 1998 government structures. and the Framework for the Protection, Care and Until now, most interventions to support chil- Support of Orphans and Vulnerable Children Living dren have been piecemeal and have not matched in a World with HIV and AIDS in 2004 have drawn the size of the problem. Urgent steps to scale up attention to the: the lack of attention given to and replicate successful interventions are needed. vulnerable children in most national development One of the major challenges facing efforts by plans; the very low level of resources reaching international and local governments, donors and families and communities supporting children philanthropic organizations to assist vulnerable made vulnerable by HIV/AIDS; the large numbers children is the development of mechanisms for of other children, in addition to orphans, that are channelling resources to grassroots organizations made vulnerable by HIV/AIDS through poverty, and to destitute families. armed confl ict and child labour; and the need to integrate interventions to benefi t vulnerable
28 Chapter4 Psychosocial interventions and psychosocial well-being
he literature on protecting and promoting of publications – all of which stress the inter- Tchildren’s development under conditions of relationship between emotions, thoughts and adversity is huge, and encompasses children living behaviour (psychological aspects) and social in poverty (Fitzgerald et al, 1995; McLoyd, 1995; experience (Psychosocial Working Group, Save the Children, 2005), childhood malnutrition 2003). (Pelto et al, 1999; Richter & Griesel, 1994; Zeitlin The Bernard van Leer Foundation has led et al, 1990), abuse and neglect (Bartlett, 2002), two consultations1 to clarify what is meant by street children (Grootaert & Kanburm, 1998; the concept psychosocial in relation to children Jacob et al, 2004), the impact of natural disasters living in communities affected by AIDS. At the (Pynoos et al, 1998), and children affected by Johannesburg meeting, the following description armed confl ict and displacement (Machel, 2000; was agreed. Psychosocial Working Group, 2003). Much is Psychosocial well-being is essential for children’s already known about interventions to support the survival and development, especially in enduringly psychosocial development of children that can diffi cult circumstances. be generalised to children living in communities affected by HIV/AIDS. Children affected by HIV/AIDS endure the loss of The problems facing children and their families caregivers, livelihoods, and health. Many suffer living in communities affected by AIDS are many deprivation, overwhelming loss and grief, upheaval, and varied. No sin- discrimination and social exclusion. gle intervention can Psychosocial care and support includes interven- produce signifi cant, … activities to protect, tions that assist children and families to cope. They sustained improve- support and promote the enable children to experience love, protection and ment in the well- psychosocial well-being of support that allow them to have a sense of self- being of the very children and families are worth and belonging. These are essential in order for large numbers of urgently needed. children to learn, to develop life skills, to participate children affected by fully, and to have faith for the future. HIV/AIDS over the extended time scale Support for children’s psychosocial well-being is of the epidemic. Instead, what is needed is a set of a key investment in human capital because it collective community and programme responses underpins all other processes for the long-term to strengthen caregivers’ and households’ com- development and stability of societies. mitments to the well-being of children, which are The description stresses the fact that children’s supported by constructive national policies and psychosocial resources, mainly derived from their the mobilization of resources. Within this mix of relationships with others, especially with primary responses, it is accepted that activities to protect, caregivers, their sense of belonging, and their support and promote the psychosocial well-being hope (Garmezy, 1991; Werner & Smith, 1989; of children and families are urgently needed (Fos- 1992), enable them to cope with hardship, includ- ter, 2002b; UNAIDS, UNICEF, USAID, 2004). ing going hungry, being cold and uncomfortable, Despite agreement about the importance of and other privations of poverty and loss. It also children’s psychosocial needs in the face of the stresses the importance of children’s psychosocial AIDS epidemic, considerable confusion surrounds well-being, not only in the short term, as a focus the use of the concept psychosocial in this fi eld (Robinson, 2005). Defi nitional issues have been 1 Johannesburg 28–29 November 2004; Cape Town, 1–5 addressed at several meetings, and in a number April 2005.
29 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
of recovery from and adjustment to parental ill- and activities to enable children to express feel- ness, death and related stressful situations, but ings and explore problems and their potential as a longer term investment in socioeconomic solutions. Memory boxes and memory books national and human development (Young, 2002; are illustrative of this category of interventions Keating & Herzman, 1999). (Denis & Makiwane, 2003; Morgan, 2004). In the literature on children affected by ● Awareness raising and education through, for violence, and more recently by HIV/AIDS, the example the dissemination of information term psychosocial is frequently used to refer about trauma and bereavement and methods to a range of intervention tools, processes and for coping with distress. The Journey of programmes to address non-material, especially Life, produced by the Regional Psychosocial the social and emotional, needs of children in Support Initiative (REPSSI),1 is a structured diffi cult circumstances. This use of the concept workshop process to raise awareness of the evolved to prioritise interventions for children of needs of children in communities affected by a different kind and purpose to emergency and AIDS (Madorin, 1999). material aid, economic and livelihood activities, health care and the like. However, broad agree- ● Social activities to support the expression of feelings, ment is growing that the focus should shift from fears and other thoughts through meetings, thea- psychosocial interventions to children’s psychosocial tre and other opportunities for interpersonal well-being. That is, the recommendation is that interaction. work in this field should concentrate on the ● Activities to support and stimulate children’s environmental and relationship conditions and development through play activities, resources interventions needed for children to grow well, to improve children’s social and physical including emotionally and socially (Williamson environments, and the provision of early child & Robinson, 2005). In addition, interventions development (ECD) services. intended to support children’s healthy develop- ment should be community-based, building on ● Skills training to improve communication, and mobilising the strengths and capacities of confl ict mediation, lay counselling services individuals, families and communities, and they for affected people, as well as skills to improve should be appropriate to local social and cultural socioeconomic conditions, community rela- frameworks (Salole, 1992). tions and the like. ● Mobilisation of social networks such as children’s Psychosocial interventions clubs, women’s support groups, and other communal activities. As indicated above, the term psychosocial is applied to a range of interventions and activities. ● Advocacy and publicity campaigns to improve At the one extreme, psychosocial interventions, access to services, remove threats to well-being responsive to the need for reconstruction and and to implement programmes to address the reconciliation in the context of confl ict and war, needs of children and families. are increasingly regarded as a core aspect of ● Strengthening of people’s spiritual resources humanitarian and developmental aid (Loughry through participation in religious activities and & Eyber, 2003; Robinson, 2005). At the other involvement in spiritual education. extreme, psychosocial interventions to counter the psychological and social distress of children Given the diversity of activities included under its affected by violence and AIDS frequently take rubric, the Psychosocial Working Group (2003) the form of counselling and other interpersonal concluded that the term psychosocial intervention and group activities. In a review of psychosocial “has come to refer to any programme that aims interventions in the context of long-standing eth- to improve the psychosocial well-being of people” nic confl ict and violence in Sri Lanka, Galappatti and means “anything from peace-building and (2003) identifi ed a number of different kinds of confl ict resolution to individual psychotherapy to activities to which the term psychosocial interven- advocacy projects for human rights” (p. 2) tion is applied. Examples of these include: Very few of these kinds of interventions have been systematically evaluated when applied to alle- ● The provision of explicitly psychological or viating the distress experience by children living medical therapeutic services such as counselling, befriending (supportive listening for catharsis), 1 http://www.repssi.org
30 PSYCHOSOCIAL INTERVENTIONS AND PSYCHOSOCIAL WELL-BEING
in communities affected by HIV/AIDS, though all health and related aspects of human functioning have strong face validity, and many have emerged that are not psychosocial. Similarly, better nutri- spontaneously as part of community responses tion, which is not usually regarded as a psycho- to affected children and families. It is important social intervention, has been shown to positively that lessons about psychosocial interventions for affect children’s attention and learning – that is, children in communities affected by AIDS are it improves psychosocial well-being (Pelto et al, learnt from other fi elds, particularly from efforts 1999). The functioning of children, like all human to assist children in poverty and children affected beings, is integrated, as is their experience of the by armed confl ict (Richter et al, 2004a; Robinson, conditions of their lives. Viewed in this way, the 2005). For example, the concepts of trauma and distinction between psychosocial and non-psy- post-traumatic stress disorder were rejected in chosocial interventions and well-being is artifi cial the violence fi eld because many children who and retained, for the most, for advocacy purposes experienced severe losses and witnessed frighten- to ensure that children’s psychosocial needs ing events did not develop psychopathology and receive attention. While it has been necessary did not require specialised psychiatric and psy- in the past to draw a sharp distinction between chotherapeutic services (Bracken & Petty, 1998; psychosocial interventions and material aid in Summerfi eld, 1999). Support from families and advocacy, this review emphasises the necessity for communities, and also from their peers, enable integrated approaches to improve the health and children to cope with extremely diffi cult situa- well-being of children in communities affected tions. This lesson is particularly important in the by AIDS. HIV/AIDS fi eld, where bereavement suffered by a child when a parent or primary caregiver dies Psychosocial well-being of children is frequently viewed as a trauma, with many of the same fault lines that emerged in relation to The approach taken in the fi eld of interventions the effects of war on children. There is no doubt to support children affected by violence and that the death of a parent causes a child immense war has been to defi ne psychosocial well-being psychological pain and distress (Dane, 1993); in children and then to design and implement however, a psychiatric approach to bereavement specifi c activities to promote these outcomes. For is inappropriate for most children (Sengendo & example, Duncan and Arntson (2004) provide a Nambi, 1997). In the same vein, prompting chil- summary of psychosocial well-being that includes dren to talk about painful experiences to strangers the following: secure attachments with caregiv- from external programmes is now regarded as ers; meaningful peer relationships and social inappropriate. Instead, it is recommended that ties; social competence; a sense of belonging; such discussions with children should only take self-worth and self-esteem; trust in others; hope, place “in a stable, supportive environment with optimism and a belief in the future. These char- the participation of caregivers who have a solid acteristics of wellbeng are clearly age-dependent, and continuing relationship with the child” and apply variably to toddlers, preschool children, (Working Group on children in middle childhood, and adolescents. Children Affected by From the broader child development literature, Armed Confl ict and a wide range of factors are known to infl uence Support from families and Displacement, 1996; children’s psychosocial well-being, and the eco- communities, and also from p. 9). logical or systemic model of Uri Bronfenbrenner their peers, enable children What, to date, has (1977) is generally adopted to visualise these to cope with extremely not been made clear infl uences (see Figure 8). In this approach, the diffi cult situations. in writings about aim is to improve the caregiving environments psychosocial interven- in which children spend their days, as well as tions and children’s the affectionate and mediational (teaching-learn- psychosocial well-being is the nature of the interac- ing) qualities of caregiver-child relationships tion between interventions and well-being. For (Hundeide, 1991; Richter, 2004b). An advantage example, it has long been known that positive of a focus on the quality of caregiving can avoid emotional states and psychosocial supports many of the enthnocentricities that characterise contribute to good health and improve recovery psychosocial interventions when Western cul- and/or adjustment to ill-health (Kiecolt-Glaser et tural perspectives are imposed on other cultural al, 2002). That is, what are commonly thought groups. Stand-alone psychosocial interventions of as psychosocial interventions have effects on for children can sometimes be seen as foreign
31 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Figure 8. Ecological model of human observed to cope extraordinarily well in condi- behaviour in the context of development tions of extreme hardship when accompanied by familiar and supportive caregivers (Freud & Burl- ingham, 1943; Rutter, 1990). For this reason, only Macrosystem a very small number of children, including those that experience very high levels of stress, develop Political Economics emotional, social and behavioural problems that systems Exosystem may require specialised help (Garmezy, 1983). As a consequence, efforts to assist children and fami- School Family Community Religious setting lies should primarily be directed at strengthening the bonds between Microsystem caregivers and chil- Classroom dren. Health Peers Mass The majority of The quality and stability of services media caregiving relationships, Culture Society children will cope and thrive if stable be they with parents, other and affectionate rela- adults or older siblings, have a strong protective effect on Nationality tionships with car- egivers and friends children, including in the are maintained or face of adversity. restored, and the daily routines and and experienced as an imposition, and often patterns of their lives are continued. A key strategy are too narrowly focused to meet the needs of to support children’s psychosocial well-being is children identifi ed by families and communities thus to strengthen primary caregiving relation- (Robinson, 2005; Verhoef, 2002b). ships and to “promote normal family and everyday Ecological models represent dynamic systems life to as to reinforce children’s natural resilience” in which infl uences at all levels exert bi-directional (Working Group on Children Affected by Armed effects. For example, while caregiving relation- Confl ict and Displacement, 1996; p.7). The ele- ships undoubtedly ments that contribute to children’s resilience infl uence children’s are: safety and security, affectionate caregivers, development, chil- Stand-alone psychosocial familiar routines and tasks (such as schooling dren’s reactions interventions for children provides), and interaction with friends. Further, and behaviour also can sometimes be seen as “one of the most important contributions that strongly influence foreign and experienced as can be made to improve children’s psychosocial their caregiving envi- an imposition, and often well-being is to help adults in a family re-estab- ronment (Bell, 1979; are too narrowly focused to lish their capacity Sameroff & Friese, meet the needs of children for good parenting. 1990). For example, identifi ed by families and A particularly risk disobedient children A key strategy to support communities. combination is a are often regarded as deeply depressed children’s psychosocial difficult to care for and isolated young well-being is is to strengthen and frequently elicit mother [or an aged primary caregiving parental anger (Verhoef, 2002a). In the bioecologi- grandparent] with relationships and to promote cal systems in which children live, proximal infl u- small children” (Ibid; normal family and everyday ences, those that occur in children’s day-to-day p. 8). life to as to reinforce relationships and experiences at home and school, The Working children’s natural resilience. especially their close relationships with affection- Group on Children Parents and others can be ate caregivers, exert the strongest infl uence on Affected by Armed helped to promote the care children’s development and well-being (Bradley Conflict and Dis- of children. & Caldwell, 1995). The quality and stability of placement (1996), caregiving relationships, be they with parents, which brought other adults or older siblings, have a strong pro- together experts in tective effect on children, including in the face of the fi eld, offers the following basic principles adversity (Richter, 2004b). Children have been and approaches in programmes involving war-
32 PSYCHOSOCIAL INTERVENTIONS AND PSYCHOSOCIAL WELL-BEING
affected children. All of their recommendations of children in solv- are applicable to children in communities affected ing problems that … many programmes by AIDS: affect them and their have a strong commitment families promotes ● Apply a long-term perspective that incorpo- to include children actively better psychosocial rates the psychosocial well-being of children. in social networks and coping and adjust- activities, as well as their ● Adopt a community-based approach that ment by countering participation in efforts to encourages self-help and builds on local hopelessness and address the problems that cultures, realities and perceptions of child despair and reinforc- they and their families development (Robinson, 2005; Salole, 1992). ing children’s sense experience. of competence. ● Promote normal family and everyday life so as Based on experi- to reinforce a child’s natural resilience (Coscia ence derived from et al, 2001). programmes to support children affected by ● Focus on primary care and prevention of violence in southern Africa, Duncan and Arnston further harm in the healing of children’s psy- (2004) conclude that there are four main aims to chological wounds. so-called psychosocial programming: ● Provide support as well as training for parents, 1. Restoring the normal fl ow of development; other adults and personnel who care for chil- 2. Protecting children from the accumulation of dren. distressful and harmful events; ● Ensure clarity of ethical issues in order to pro- 3. Enhancing the capacity of families to care for tect children (for example, from being labelled their children, and as an AIDS orphan). 4. Enabling children to be active agents in ● Advocate for the fulfi lment of children’s human rebuilding their communities and in actualis- rights. ing positive futures. This approach is also consistent with what is called Many interventions have been developed to sup- a rights-based orientation to programming (Rob- port the healthy development of children living inson, 2005). For example, the preamble to the in conditions of poverty, stress, war and confl ict, Convention on the and in communities affected by HIV/AIDS. These Rights of the Child interventions focus on a variety of domains of states that “Con- children’s development, such as learning and Provide support as well as vinced that the fam- adjustment, and may be delivered through a training for parents, other ily, as the fundament variety of mechanisms. Some programmes adults and personnel who group of society and provide inputs, such as stimulation or support, care for children. the natural environ- directly to children (Grantham-McGregor et al ment for the growth 1994, while others attempt to build the confi - and well-being of all dence and competence of caregivers (Spiker et al, its members and particularly children, should be 1993). Some are centre-based and others are built afforded the necessary protection and assistance around home visits or community groups (Olds so that it can fully assume its responsibilities et al, 2002). At the core of most programmes are within the community” (Cook, 2001). efforts to strengthen caregiver-child relation- In addition to the above, many programmes ships. Evaluations of these programmes, either have a strong commitment to include children as pilot projects, or when taken to scale, have actively in social networks and activities, as well demonstrated their effectiveness, especially when as their participation in efforts to address the properly implemented and initiated early in the problems that they and their families experi- lives of children (Glass, 1999; Guralnick, 1998; ence (Laws & Mann, 2004). Children’s agency, Schweinhart & Weikart, 1993; Shonkoff & Mei- their active engagement and participation, is an sels, 2000). Reviews by the World Bank and others essential aspect of building children’s resilience have laid out the economic arguments for invest- (Apfel & Simon, 1996; Grover, 2005, enabling ing in children’s healthy development, especially children to deal with hardships that are inevita- under conditions of deprivation, dislocation and ble in conditions of poverty, war and HIV/AIDS stress (Karoly et al, 1998; Keating & Herzman, (Hart, 2004). In this sense, the active engagement 1999; Young, 2002; 2004). In addition to these, a
33 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
number of manuals and materials have also been with the love and support of affectionate caregiv- developed for a range of psychosocial interven- ers and peers. Their needs for support differ by tions in the context of poverty, armed confl ict and age and maturity and this must be taken into HIV/AIDS (Arntson & Knudsen, 2004; Baingana account. Some children require additional atten- & Bannon, 2004; Baron, 2002; Colling, 1998; tion and understanding from adults around them Cook, 1998; 2001; International HIV/AIDS Alli- to help them adjust to and cope with diffi culties, ance 2000; Killian, 2004; Loughry & Eyber, 2003; most importantly from parents, family members Madorin, 1999; Mallmann, 2003; Scope & Family and teachers. A few children need outside help, Health International, 2001; Simonsen & Reyes, either to assist them directly because they are 2003; Strang & Ager, 2004). demonstrating psychopathological symptoms, In 1998, the Programme on Mental Health in or to advise and counsel their caregivers on how the WHO supported an intervention package for best to interact with them to assist the child to Improving Mother-Child Interaction to Promote Better recover (see Figure 9). Psychosocial Development in Children (PEIMAC). Narrow psychosocial programmes are not The programme is based on two fundamental sustainable, and also not likely to be effective, principles of child development, well supported given the broad range of problems experienced by empirical evidence. These principles are, by children living in communities affected by fi rstly, the importance for young children’s healthy HIV/AIDS. In additional, targeting orphans may development of close affectionate relationships add signifi cantly to their existing social mar- with adults and, secondly, the critical role of medi- ginalisation (UNAIDS, UNICEF, USAID, 2004; ated learning for World Bank & UNICEF, 2002). Lessons learnt children’s cognitive in other fi elds of intervention to improve the care and language devel- and protection of children indicate that efforts … the available evidence opment (Hundeide, to promote children’s psychosocial well-being in and experience strongly 1991; Klein, 2001).1 the face of adversity, including among children in cautions against narrow The programme communities affected by AIDS, require that care specialised psychosocial advances a practical systems around the child, especially in the family, programmes for identifi able set of guidelines for be mobilised in an integrated way (Psychosocial groups of children, such as promoting caregiver- Working Group, 2003; Robinson, 2005). Under orphans … Lessons learnt in child relationships extremely diffi cult circumstances, the coping other fi elds of intervention that is easily incor- capacity of caregivers comes under strain and is to improve the care and porated into pro- best addressed by support group activities that protection of children indicate grammatic work. counter isolation and assist with the family’s most that efforts to promote As will be set out pressing concerns. children’s psychosocial well- in the remainder of being in the face of adversity, the review, the avail- including among children Focus on early child development able evidence and in communities affected experience strongly While efforts to support children in communi- by AIDS, require that care cautions against ties affected by AIDS should attempt to reach the systems around the child be narrow specialised most vulnerable children, it is important that all mobilised in an psychosocial pro- interventions be consistent with the broad goals integrated way. grammes for iden- of human and social development. Two clear tifiable groups of principles are available to frame interventions children, such as within this perspective. orphans (Robinson, 2005). Practititioners are well Firstly, children’s aware of the stigmatisation and isolation that can well-being and their emotional, social, develop around children who are labelled “lucky … all interventions should health and educa- orphans” because of the attention they receive attempt to strengthen family tional outcomes from external agencies (Robnson, 2005). and community support are dependent on Most children cope with diffi cult circumstances for children. supportive families and communities, 1 Mediated learning involves adults and older children as illustrated by an describing and explaining the world of objects and events to a young child in ways that enable the toddler to acquire ecological perspective (see Figure 8). In turn, sup- an understanding of a cultural world. portive families and communities are the product
34 PSYCHOSOCIAL INTERVENTIONS AND PSYCHOSOCIAL WELL-BEING
Figure 9. The hierarchy of children’s needs for psychosocial care, support and intervention
Children severely affected High Intensive intervention
Children at risk – experienced severe losses Rehabilitation and improvement of the community Rehabilitation social support mechanisms
Children generally affected but not Psychosocial support such as return to normalcy, play, yet directly Psychosocial support building a sense of control, emotional support
Psychosocial care Responsive care provides All children Psychosocial care children with a sense of belonging and self- confidence – what families do
of social and economic participation and empow- This means that interventions for children living erment, on the one hand, and enabling policies in communities affected by AIDS, as is the case and institutions, on the other hand. These inter- for all children, need to be targeted to the earliest relationships are illustrated in Figure 10, which years of life to ensure the greatest gains for chil- depicts the World Bank’s Framework for Action dren (Lusk et al, 2000; Dunn, 2005a).1 Specifi cally for Children and Youth (2005). For this reason, all this entails supporting children’s nutrition and interventions should attempt to strengthen family growth and minimising childhood illnesses (Pelto and community support for children. et al, 1999), promoting strong caregiver-child Secondly, the rates of return on human capital relationships for children’s nurture and protec- investment, through support for development, tion (Richter, 2004b), decreasing environmental nutrition education, improvement of environ- threats to children’s mortality and morbidity, mental conditions and the like, are greatest when including through exposure to abuse, toxins made early in life, as is illustrated by the work of and injury (Bradley, 1993), increasing access to Nobel laureate, James Heckman (see Figure 11). early child development programmes for safety,
Figure 10. Framework for Action for Children and Youth (World Bank, 2005)
Age 24 ENABLING POLICIES AND INSTITUTIONS Livelihoods and employment
18 Informal and non-formal education Early Secondary behaviours and tertiary Reproductive health, 14 HIV/AIDS, substance education abuse, violence
Primary Protection PARTICIPATION AND EMPOWERMENTeducation of the most 5 Safe (EFA/FTI) vulnerable Early (OVO) Child healthy childhood health and environment development nutrition Water, sanitation, housing 0
SUPPORTIVE FAMILIES AND COMMUNITIES
1 See also: The International HIV/AIDS Alliance; the Working Group on Early Childhood development; the Consultative Group on Early Childhood Care and Development; the World Bank; the Early Childhood Development Network for Africa; the Bernard van Leer Foundation.
35 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Figure 11. Rates of return to human Shortcomings of approaches to date capital investment There have been several substantial reviews by researchers and practitioners of factors affecting Preschool programmes children in communities affected by AIDS, as well as of principles and strategies for appropriate programmatic responses (see, for example, Foster Schooling & Williamson, 2000; Grainger, Webb & Elliott; Opportunity Cost of funds 2001; Levine, 1994; Richter et al, 2004; Robinson, r Job training 2005; Smart, 2005; Subbarao & Coury, 2003; Williamson, 1995, 2000, among others). Recently, major efforts have been made to pull together research evidence on the needs of children living Rates of return to investment in human capital Rates of return Preschool School Post school in communities affected by AIDS (Birdthistle, 0 Age 2004), including for psychosocial support (Sherr, Rates of return to human capital investment initially setting investment to be equal across all ages 2005b), as well as the needs for psychosocial support of HIV infected women (WHO, 2003). Despite what is now a voluminous literature on stimulation and preparation for formal schooling the topic, policy, programming and practice to (Barnett & Boocock, 1998; Myers, 2000; Young, meet the needs of children living in communi- 2002), and ensuring access to and retention in ties affected by AIDS remains handicapped by a education (Ainsworth et al, 2005; UNESCO, number of issues that were discernible from the 2002; World Bank & UNICEF, 2002). start and still require leadership for their resolu- Early intervention in the context of the AIDS tion. These include: epidemic is an important consideration given that the almost exclusive focus on orphaning is drawing attention away from vulnerable young The potentially misguided targeting children. The time of orphans lag between HIV In 2004 WHO and UNICEF cautioned that the … it is preschool children infection and death meaning of the term orphan varied considerably who are exposed to the results in a mean age in different cultural settings. The defi nition of an damaging effects of of orphaning of 6.2 orphan as a child under 18 years of age either or deteriorating care if their years (Johnson & both of whose parents have died (WHO/UNICEF, mother or other primary Dorrington, 2001); 1994; UNAIDS/UNICEF/USAID, 2004), is well caregiver is anxious, Mugabe et al, 2002). accepted for measurement purposes, especially withdrawn or beginning to This means it is pre- for the secondary analysis of existing survey data experience bouts of ill- school children who and the collection of new national data. However, health, as well as subject to are exposed to the the defi nitional category serves the function of inadequate nutrition and damaging effects of monitoring the stage and impact of the epidemic health care if households deteriorating care on a national level better than it does to identify become destitute because of if their mother or vulnerable children. Children defi ned as orphans adult illness and death. other primary car- may or may not be vulnerable, depending on egiver is anxious, their pre-existing child care conditions (such as withdrawn or begin- the overall level of child fosterage, or what has ning to experience been called child circulation), the health and bouts of ill-health. Young children are also subject availability of a surviving parent, the acceptance to inadequate nutrition and health care if house- and affection received from family and kin, the holds become destitute because of adult illness socioeconomic resources of the household that and death. In addition, there are indications that takes in an orphaned child, and the like. In younger children are more likely to be moved addition, there is growing concern that, because from one household to another during crises of communities are aware of the special assistance illness and death (Hosegood et al, 2004). This given to orphans by external agencies, orphaned causes instability in caregiving, something that is children are less likely to be taken in by families known to have adverse effects on the adjustment and children may be labeled as orphans (World and development of young children. Bank & UNICEF, 2002).
36 PSYCHOSOCIAL INTERVENTIONS AND PSYCHOSOCIAL WELL-BEING
The inappropriate institutionalization of munities affected by age (Kelly, 2002), nor can or vulnerable children should they be sustained over the long time scale of the AIDS epidemic. Orphanages draw donor interest and have contin- ued to proliferate in sub-Saharan Africa despite the fact that institutional care is an inappropri- Failure to adequately support family ate response to children living in communities and community responses to affected by HIV/AIDS (Robinson, 2005; Frank et vulnerable children al, 1996; Tolfree, 1995; 2003; Williamson, 2004). From the earliest writing on the subject, it has Increased institutionalization of children has been realized that the impact of AIDS on children occurred in other times and places in response is felt inside families and households – grandpar- to political, economic, and social upheaval. Wars, ents nursing their sick adult children, trying to epidemics, and political ideology have all been hold the family together and struggling to provide associated with the rise of orphanages in Britain for clusters of grandchildren; kin and neighbour- and the United States, Eastern Europe, and South hood families taking in orphaned children; and America (McLure, 1981; Ransel, 1988). In addi- siblings trying to stay together with the help of tion, child institutions have and continue to be aunts, cousins and family friends (Nampanya- expressions of benefi cence during times of crisis Serpell, 2001; WHO/UNICEF 1994). In 2005, (Milanich, 2004). The AIDS epidemic is no excep- Geoff Foster’s study, Bottle necks and drop feeds, tion. Orphanages in many poor countries are a showed that families continue to be the mainstay misnomer. Institutional care, when available, is of the response to care for and protect children, and used more often to provide care for children of that they do so from their own meager resources destitute parents than for children whose parents (Deininger, et al, 2003). It is also now known have died. For this reason, the majority of so- that services to improve child health and mental called AIDS orphans in institutions in southern health are most effectively delivered through Africa, are not orphans in the strict sense of the the family, through improved family education, word, but have been admitted to care from deeply support and participation, and that involvement impoverished families. of families maximizes the impact of services for Seen from the outside, group or institutional children (Foster, 2000; Hoagwood, 2005). How- care may appear to be preferable to family destitu- ever, families need tion, in which children go ill-clad, under-fed and economic, social, too poor to be in school. This tension is not unique psychological and to HIV/AIDS. Jack Goody (1969), in the context spiritual support to … families need economic, of cross-cultural adoption, drew attention to the be able to cope with social, psychological and Western assumption that provision of services to the additional bur- spiritual support to be able needy children is preferable to traditional modes den of care caused to cope with the additional of support by poor extended families. These senti- by increased num- burden of care caused ments drive donor initiatives to establish child bers of vulnerable by increased numbers of care institutions. Many African societies have children (Ansell & vulnerable children. rejected institutional care (Beard, 2005; Urassa et Young, 2004; Linsk al, 1997; Wolff & Fesseha, 1998; World Bank & & Mason, 2004; UNICEF, 2002) and children, when asked, prefer Oburu, 2005). International and national agen- to stay with their families even in dire material cies, as well as governments and national NGOs, circumstances (Kelly, 2002). Institutional care need to recognize, and act upon, the importance is expensive and detracts resources from much- of getting resources directly to families and com- needed family assistance (Desmond & Gow, munities to sustain, rather than to undermine 2001; Dunn et al, 2003; World Bank & UNICEF, their efforts to provide care and protection for 2002). Group care is known to be damaging to children affected by HIV/AIDS. the development of young children (Frank et al, 1996), and it is diffi cult to prevent the abuse of older children in institutional environments and Summary for institutionalized children to adjust to condi- Among the collective community and programme tions in the society at large (Barth, 2005; Kelly, responses required, activities to protect, sup- 2002). Lastly, institutional care cannot match the port and promote the psychosocial wellbeing of enormity of the needs of poor children in com- children and families are urgently needed. While
37 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
a wide range of psychosocial interventions have as to reinforce children’s natural resilience. been described, it is generally agreed that work Because interventions to promote development in this fi eld should concentrate on promoting the have their greatest effect in early childhood, environmental and relationship conditions needed efforts to help children living in communities for children to grow well, including emotionally affected by AIDS need to be targeted to the young- and socially. Most children affected by AIDS will est age groups. It is largely preschool-aged chil- cope well with the support of families, school dren who are exposed to the damaging effects of and friends. Particularly vulnerable families need deteriorating care if their mother or other primary material, social and spiritual support. caregiver is anxious, withdrawn or beginning to A small number of children need additional experience bouts of ill-health,. They are also most assistance. When required, external interventions vulnerable to inadequate nutrition and health care should be community-based, and build on the if households become destitute because of adult strengths and capacities of individuals, families illness and death. and communities. Stand-alone psychosocial In efforts to support affected children, some interventions for children often are too nar- harmful practices are beginning to emerge and rowly focused to meet the needs of vulnerable need to be strongly countered. These include children. The quality and stability of caregiv- the potentially misguided targeting of orphans ing relationships have a strong protective and to the exclusion of other highly vulnerable chil- rehabitative effect on children, including in the dren; an increase in institutional care, especially face of adversity. The majority of children cope for younger children, without suffi cient effort and thrive if stable and affectionate relationships directed to supporting family fostering; and the with caregivers and friends are maintained during failure to support family and community care in diffi cult and testing times. A key strategy is thus favour of programmes that give external assist- to support children’s psychosocial wellbeing by ance to children. External resources need to be strengthening primary caregiving relationships directed to families, to enable them to care for and promoting normal family and everyday life so children, including orphans.
38 Chapter5 Health sector responses to children affected by the HIV/AIDS epidemic
Lack of involvement by the health As a result of the general lack of responses, the sector in the situation of children damaging view that “they’re just going to die any- affected by HIV/AIDS way” is prevalent and this perception has, to some degree, extended also to children of HIV-positive n general, the health sector has paid little parents and so-called “AIDS orphans”. To some Iattention to the situation of children living with extent this is due to the mistaken belief that all and affected by HIV/AIDS in sub-Saharan Africa, HIV-positive mothers automatically transmit their especially young children (Dunn, 2005a). This is infection to their children. The children of HIV- all the more surprising given the fact that children positive parents may represent 17% of all new HIV infections and young be denied health care children younger than 8 years make up 90% of or treatment in cases … the health sector has CLHA and one quarter of the population of sub- where health work- paid little attention to the Saharan African countries affected by HIV/AIDS ers are faced with situation of children living (UNAIDS, 2004). With respect to programming, limited resources with and affected by HIV/ most effort has been directed to the psychosocial, and families might AIDS in sub-Saharan Africa, educational and sexual and reproductive health decide not to invest especially young children. needs of older children affected by HIV/AIDS, in what they see as especially orphans, with a corresponding rela- a terminally ill child tive neglect of the needs of young children and (Lusk & O’Gara, children living with and caring for ill and dying 2002). A study of children affected by HIV/AIDS parents and other family members. Few studies in several parts of South Africa found malnutrition have examined the needs of very young children to be widespread, and health workers reported living with HIV/AIDS or examined the parenting, that diarrhoea, chest infections and child sexual health and development needs of children under abuse were problems (Giese et al., 2003b). fi ve living in families affected by HIV/AIDS. Early and continued programmes for orphans Yet the need to link early childhood with HIV and vulnerable children have involved civil soci- and AIDS is clear. The effects of the epidemic on ety organizations and some government depart- very young children are profound and have imme- ments, with limited engagement by the health diate and long-term consequences on children’s ministries of affected countries. The development health and development (Dunn, 2005b; Sherr, of The Framework was led by representatives from 2005b). Despite the importance of preschools and UNAIDS, UNICEF and USAID and endorsed by crèches to the development of children, especially many other organizations including WHO, but those affected by HIV/AIDS, no studies have yet health sector perspectives are noticeably lacking examined the potential of expanding integrated in the fi nal document. In 2003, UNAIDS, the preschool services to support children affected by World Bank and UNICEF published Operational HIV/AIDS. Considerable publicity and planning is Guidelines for Supporting Early Childhood Develop- being given to ensure the roll out of anti-retroviral ment (ECD) in Multi-Sectoral HIV/AIDS Programmes treatment, but without the same level of national in Africa, part of a process integrating effective or international effort to prevent the premature broad-scale interventions to ensure the healthy deaths of young children living with HIV/AIDS physical, emotional and cognitive development by ensuring they receive early diagnosis and of young children (Seifman & Surrency, 2002). the best possible standard of care, nutrition and However, there is little documentation indicating treatment provided by their guardians and health how the health sector has taken this further. service providers. In 2000/2001, WHO convened meetings
39 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
in southern Africa to adapt guidelines for the ily because of a lack of access to ART (Anabwani Integrated Management of Childhood Illness et al, 2005; Smart, 2005). While a child comprises (IMCI) to the context of HIV/AIDS. There were no one in six AIDS deaths, fewer than one in 20 of further major international UN efforts to support those individuals now receiving ARV drugs is infants and children living with HIV/AIDS until under 15 years of age (Chase, 2005). The problems global consultations in connection with ART arise mainly from a lack of cheap feasible diag- were convened by UNICEF and WHO in 2004. nostic tests for infants, lack of trained health per- Lack of attention by national health ministries sonnel and affordable child-friendly ARV drugs. to issues surrounding children living in com- Prices for paediatric ARVs are fi ve times higher munities affected by AIDS, including CLHA, have than adult regimens. Simplifi ed treatment guide- contributed to the failure to ensure that children’s lines coupled with a range of fi xed-dose combina- issues are adequately addressed in National Stra- tions of ARVs that tegic HIV/AIDS Plans and in HIV/AIDS-related require only one submissions to the Global Fund. This, in turn, or two pills twice Children with HIV/AIDS are may be a consequence of an excessively medical a day make it easier dying unnecessarily because understanding of the impact of the epidemic on to treat HIV/AIDS of a lack of access to ART. children, leading to the perception that issues in adults. Develop- related to vulnerable children are the preroga- ment of simplified tive of social welfare departments rather than drugs regimens for health ministries (Matshalaga & Powell, 2002). children lags far behind. It may also result from the shortage of child- Current global efforts to scale up access to focused expertise within most hospitals and the treatment make a clear commitment to include lack of child health-oriented medical and nurse infants and children. Compared to adults, HIV practitioners within Ministries of Health and disease in children is more aggressive and pro- paediatric departments in developing countries portionately more children than adults living with (Ebrahim, 1985). HIV/AIDS meet the requirements to commence ART. The ‘3 by 5’ initiative aimed to include Anti-retroviral treatment programmes children in at least 10–15% of all treatment programmes. Of 12,000 patients who accessed Recently the health sector has engaged more ART by early 2004 in Médecins Sans Frontières strongly in specifi c HIV/AIDS prevention and projects, only 700 (6%) were children under 15 mitigation programmes in developing countries. years of age (WHO, 2004). Most global initiatives Anti-retroviral treatment rollout and prevention and national programmes for HIV care, support of mother-to-child transmission of HIV (PMTCT) and treatment do not have quantitive targets nor programmes have direct benefits to children clearly defi ned strategies for including children affected by HIV/AIDS. (UNICEF, 2004). Hardly any health facilities offer An estimated 6.5 million people in low- and integrated adult and paediatric HIV/AIDS services middle-income countries will die in the next that reduce opportunity costs for affected families two years if they do not receive ART. By mid- and avoid duplication of health services. 2005, only an estimated 970,000 people in these In 2004, UNICEF hosted a consultative meet- regions were receiving this treatment (WHO, ing in Lusaka, Zambia, and a global consultation 2005b). The WHO “3 by 5” global target aims to in New York entitled “Reaching out to Children in assist rollout of ART to enable 3 million people the WHO “3 by 5” Initiative: Paediatric HIV Care to receive ART by 2005. The adult ART initiative and Treatment”. Conclusions reached at these potentially brings large numbers of vulnerable meetings recognized that the response towards children – those in the care of sick adults living equitable access to care, support and treatment with HIV/AIDS – in contact with health services. of children living with or exposed to HIV will To date, few attempts have been made by health have to be anchored on strong alliances and service providers to capitalize on this opportunity partnerships with both international and national by extending the focus in such consultations from actors including non-governmental organizations, individual patients to their affected children, faith-based organizations and the private sector. through, for example, the offer of HIV testing to Later that year, WHO and UNICEF held a tech- family members and referral of children to com- nical consultation entitled: “Improving Access to munity-oriented support services. Appropriate Paediatric ARV Formulations”. Children with HIV/AIDS are dying unnecessar- The emphasis on making anti-retroviral treat-
40 HEALTH SECTOR RESPONSES TO CHILDREN AFFECTED BY THE HIV/AIDS EPIDEMIC
ment available to CLHA in sub-Saharan Africa Communities are Coping with CLHA” brought may have unintended consequences. Rather than together implementing partners delivering health increasing access to basic care for all CLHA, ART facility and community based services for CLHA programs may inadvertently result in a two-tier that defined a comprehensive care package, system with excellent services for a minority of detailed in Table 2 (Miller et al, 2005). CLHA accepted onto their waiting lists, but little attempt to improve the provision of health care Prevention of mother-to-child for the majority of CLHA. There are concerns transmission programmes that the most “easy to reach” children living in urban areas and most “easy to treat” such as those One of the successes in HIV/AIDS programming with more education and higher incomes will has been the prevention of mother-to-child trans- receive treatment. ART programs, if not properly mission (PMTCT) in some developed countries. conceived and managed, also have the potential Of the 640,000 HIV-positive children throughout to draw well-trained staff and resources away the world newly infected during 2004, only 100 from primary health care service provision, and were in Europe or North America whilst 560,000 thereby increase inequity in access to care and were in Africa (Médecins Sans Frontières, 2005). treatment for CLHA. In contrast to the primary Progress in expanding access to preventive ARV health care “bottom-up” approach that sees health regimens into severely affected countries has care centres as the main implementers of health been slow. In sub-Saharan Africa, Botswana is services, treatment services for CLHA have been the only country to have completed pilot PMTCT established predominantly through tertiary and programmes and entered the scale-up phase. Only quaternary level facilities in a “top-down” man- 10.5% of pregnant African women can access ner. PMTCT services and only 2.2% of HIV-positive While ART is undoubtedly an essential ele- African mothers receive preventive ART (UNAIDS ment of a comprehensive package, providing care, 2004; UNICEF/ESARO/HIV, 2004). In addition to support and treatment for children living with reducing the number of children acquiring HIV HIV/AIDS clearly goes beyond simply providing through vertical transmission, PMTCT provide medication. A recent regional workshop on “How opportunities to improve the healthy development of children in communities affected by AIDS. Table 2. Comprehensive care for children PMTCT-plus programmes provide ART to HIV- living with HIV/AIDS positive mothers and fathers, benefi ting children by prolonging their parents’ healthy lives; some Primarily medical also provide ART to HIV-positive children for Basic medical care whom attempts to prevent HIV prevention have Diagnostic and testing services failed. But PMTCT programmes provide, as yet unrealised, entry points for other interventions, Prophylaxis against opportunistic infections (OI) such as support for the nutrition of mothers and Appropriate management of HIV and OI (including ART & children through targeted food assistance and complementary traditional treatment) antiretroviral treatment (ART) programmes; Rehabilitation services groups to provide psychosocial support to HIV+ women (WHO, 2003); and programmes to pro- Palliative care services when the time comes mote children’s development through caregiver Counselling, education and information about HIV- sensitisation and support, and opportunities to related illness identify siblings of index children who may also Primarily social / community be HIV-infected. Children in PMTCT programmes living with, Good nutrition for appropriate growth and development or exposed to, HIV and ART require closer fol- Social support (meeting needs of child – food, clothing, low-up than is currently being done, for early shelter, love) identifi cation of problems. For CLHA on ART, this Spiritual & psychosocial supportCompetent caretakers involves managing their medication and monitor- with best interests of child at heart ing the impact of treatment, including drug toxic- Home-based care ity. But most CLHA identifi ed through PMTCT programmes do not receive ART, nor are most Caring for carers likely to access treatment in the immediate future. Maintaining schooling These children are at risk of imminent death and
41 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
need to be provided with services supervised by depression and illness. Some children in PMTCT healthworkers. In addition, children exposed to programmes are orphaned in infancy and are maternal HIV need special health services. These looked after by substitute caregivers. Young services include, as a minimum: children that are maternally orphaned or whose mothers are seriously ill have a higher risk of ● Regular follow-up by health workers of chil- morbidity and mortality than children whose dren identifi ed to be HIV-infected to monitor mothers are well. Children with sick parents are and respond to nutritional problems and more likely to suffer malnutrition since nutritious opportunistic infections. foods may become less available for economic ● Cotrimoxazole prophlaxis to all children reasons and sick mothers are unable to spend exposed to HIV infection until seropositiv- time feeding young children (World Bank, 1999). ity has been ruled out and the mother is no For this reason, children’s nutrition and access longer breastfeeding, and indefi nitely to all to education may sometimes improve after the HIV-positive children not on ART (WHO/ death of parents from AIDS (Gilborn et al, 2001). UNAIDS/UNICEF, 2004). Increasingly, it is being recognised that young children under these conditions may receive ● Counseling of caregivers concerning the inadequate care, supervision and psychosocial importance of obtaining early medical assess- stimulation because their caregivers are preoc- ment for young children exposed to HIV and cupied by stress, depressed, or socially isolated CLHA for all but minor illnesses. with limited material support (Patel et al, 2004; ● Closely supervised basic medical services Rochat et al, 2006; Stein et al, 2005). Few attempts including health education to mothers and have been made through PMTCT programmes to other caregivers on the maintenance of nutri- build services that recognize the need to protect tion and the importance of recognizing and the health and development of young uninfected promptly treating acute respiratory infections HIV exposed children who are living with HIV- and diarrhoeal disease for both CLHA and positive parents. infants offered replacement feeding or early weaning. Opportunities for health systems ● Access to HIV testing for HIV exposed chil- through increasing HIV/AIDS dren. resource provision Over three-quarters of children in contact with The lowest child mortality rates in Africa occurred health services through PMTCT programmes are in the 1970s. In the mid 1980s, the rate of decline not infected with HIV. These children are none- in child mortality rates slowed significantly, theless at risk; fi rstly, because they are exposed with some countries even experiencing reversals to HIV and perhaps (WHO, 2005a). Overall, there was an alarm- ART and, secondly, ing deterioration in the effectiveness of health Few attempts have been because they are in systems. Immunization coverage rates and the made through PMTCT the care of moth- proportion of women receiving skilled attend- programmes to build ers and other car- ance at birth – two key indicators of effectiveness services that recognize the egivers living with – declined in many countries in sub-Saharan need to protect the health HIV/AIDS. Exposed Africa. Although the impact of HIV/AIDS has been and development of young children need health blamed for the reversals in health gains witnessed uninfected HIV exposed care in order to in many African countries (Adetunji, 2000), the children who are living with reduce their risk of decline predates the emergence of the HIV/AIDS HIV-positive parents. HIV transmission epidemic and relates to the economic crises in the through provision African region and structural adjustments and of appropriate advice other reactions that severely undermined social concerning feeding. sector spending (Samba, 2004). If they are being artifi cially fed or have discontin- Increased fi nancing in response to HIV/AIDS ued breastfeeding early, they need specifi c guid- provides an opportunity to expand the coverage ance to prevent diarrhoeal disease, respiratory of ART and PMTCT programmes that directly infections and malnutrition. benefi t children. Scaled up responses also present In addition, these children are at risk because ministries of health with opportunities to improve of their mother’s predisposition to anxiety, the capacity and increase the skills of health
42 HEALTH SECTOR RESPONSES TO CHILDREN AFFECTED BY THE HIV/AIDS EPIDEMIC
service providers Gradually, AIDS was redefi ned as a development … there is growing through strength- issue, requiring a multi-sectoral response. How- recognition that the rapid ening infrastructure ever, the ways in which multi-sectoral responses scale-up of treatment access and health delivery are coordinated remains poorly defi ned and has requires a functional and systems. Following been assigned to bodies that lack the necessary effective health system … the global commit- capacity, expertise, authority and resources, such Vertical ART programmes ment made to widen- as national AIDS committees and vertical pro- will undermine the ing treatment access, grammes. Responsibility has moved away from provision of primary there has been grow- public health professionals who are trained to health care. ing recognition that appreciate socio-economic dimensions underly- the rapid scale-up ing disease and to lead multi-sectoral responses of treatment access through structures that reach into affected com- requires a functional munities. At national level, the advent of effective and effective health system. The heads of state of and simplifi ed interventions and of cheaper ARV the Southern African Development Community drugs has provided governments with the oppor- (SADC) resolved in the 2003 Maseru Declaration tunity to spearhead effective national HIV/AIDS to promote responses to HIV and AIDS through responses. Ministries of health have a comparative strengthened health systems. The Pan African advantage in implementing systemic approaches Treatment Access Movement (PATAM) also to HIV/AIDS responses. Capable people in well- resolved in 2004 that the ‘rollout of anti-retroviral organised institutions are critically needed to lead therapy be entwined with rebuilding our health multisectoral responses and the health sector is systems’. The EQUINET regional conference in particularly well placed to assume this role. June 2004 asserted that the expansion of ART was an urgent priority that needed to be addressed ‘through funding and approaches that strengthen, Figure 12. Vicious and virtuous cycles of and do not compromise, our public health serv- ART/HIV programmes and PHC provision ices and systems’ (McCoy, 2005). (McCoy, 2005) The potential for both negative and positive Virtuous circle effects on health care systems (Cornia et al, 2002) can be conceptualised in terms of treatment pro- Improved delivery grammes being caught up within either a ‘vicious’ of ART and PHC or ‘virtuous’ cycle.
● The ‘virtuous cycle’ sees an increase in funding ART/HIV + Strengthened for primary health care systems, increasing programmes health systems access and communities empowered to have a variety of choices for comprehensive care at every stage along the continuum of the AIDS epidemic. It also sees ART programmes + expanding access to treatment whilst simulta- neously strengthening the health care system and reducing health care inequities with posi- Vicious circle
tive outcomes both for ART and for primary Weak and health care more generally (Figure 12). unsustained delivery of ART ● The ‘vicious cycle’ sees expensive vertical ART and PHC programmes focusing only on HIV-positive ART/HIV – Undermined children and undermining the provision of pri- programmes health systems mary health care to all vulnerable children, as well as negatively affecting the broader health system and the long-term success of treatment programmes. – Initially, AIDS was defi ned as a health issue, to be handled by health ministries in poor coun- tries and the health departments of aid agencies.
43 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Primary health care and children’s reductions in specifi c disease mortality, but these healthy development approaches also did little to affect levels of under- lying childhood malnutrition, which increased in In 1978, at a joint WHO-UNICEF Conference, some sub-Saharan Africa countries in the 1980’s the governments of 134 countries and voluntary and 90’s, and thus had limited impacts on overall agencies endorsed the concept of primary health childhood mortality (WHO, 2005a). care (PHC) as the way to achieve “Health for All In 1992, WHO and UNICEF initiated a syn- by the Year 2000”. PHC was defi ned as “essential dromic rather than a disease-oriented approach health care made universally accessible to indi- to child health and development, called the inte- viduals and families in the community by means grated management of childhood illness (IMCI). acceptable to them, through their full participa- Unlike GOBI, CDD and ARI programmes, this tion and at a cost the community and country can approach accommodates the holistic needs of afford”. In addition to adopting health measures to children within the context of their families and prevent and treat diseases, this Alma Ata Declara- communities. IMCI initially focused on two main tion also affi rmed the importance of approaches components: improving the case management involving food security, water and sanitation skills of health workers and improving manage- and health promotion. PHC, with its stress on ment systems within the health sector concerned political commitment to equitable socioeconomic with childhood illness. But the IMCI approach development and community participation in its is not limited to service delivery by the health implementation, articulated the founding princi- sector. In keeping with the PHC approach and ples underlying the response of health ministries Alma Ata, IMCI also stresses the importance of of developing countries, and of WHO. community participation. In 1997/98, UNICEF There are similarities between the issues lead- was instrumental in developing a “community” ing to the declaration and those surrounding the component of IMCI – improving family and com- HIV/AIDS epidemic, nearly thirty years later. At munity health practices – that builds on lessons the time of the Alma Ata Declaration, there was learned by civil society in relation to child health an excessive emphasis on hospital-based delivery and development, including the importance of: of curative services and little appreciation by the health sector of the need to infl uence socio- ● Closer links between health facilities and the economic conditions underlying most ill-health communities they serve in developing countries. Multisectoral responses ● Improved care outside of health facilities to childhood malnutrition were crucial factors reinforcing the PHC approach, since malnutrition ● Integrated promotion of key family practices was the underlying cause (as it still is) of most critical for child health and nutrition deaths, as well as poor development amongst ● Multi-sectoral approaches to child health and children under fi ve years of age. This highlighted development. the need for health services to address the social dimensions of disease in order to prevent them, In 1997, with support from USAID, the CORE minimise their clinical manifestations, promote (Child Survival Collaboration and Resources) recovery, and reduce their reoccurrence. initiative, composed of 37 international NGOs, Throughout the 1980’s, UNICEF and WHO was established. This initiative sought to advance targeted selective approaches to child health based Community IMCI and, in particular, stressed on the promotion of GOBI (growth monitoring; the importance of partnerships between health oral rehydration, breastfeeding, and immuniza- facilities and the communities they serve. The tion) and GOBI-FFF (family spacing, female edu- concept of a multi-sectoral platform for child cation, and food supplementation) principles. The health, nutrition, and development, an approach approach was effective in dramatically reducing similar to what was known as “Comprehensive deaths from diarrhoea and deaths that could be Primary Health Care”, recognized the need for prevented by immunization – but had little impact health centres to act as hubs for networking in on malnutrition, which is the product of under- areas as diverse as income generation, education, lying social conditions such as poverty, female agriculture, social and political structures and illiteracy and disempowerment. The impact of water and sanitation. disease-specifi c approaches, such as the control While UNICEF had overall responsibility for of diarrhoeal disease (CDD) and the management Community IMCI, WHO began to explore ways in of acute respiratory infections (ARI) also led to which to promote children’s healthy development
44 HEALTH SECTOR RESPONSES TO CHILDREN AFFECTED BY THE HIV/AIDS EPIDEMIC
Integrated Management of Childhood Illnesses (IMCI) (WHO, 2005c) IMCI is an integrated approach to child health that focuses on the well-being of the whole child. IMCI aims to reduce death, illness and disability, and to promote improved growth and development among children under 5 years of age. IMCI includes both preventive and curative elements that are implemented by families and communities as well as by health facilities.
What does IMCI strive to do? In health facilities, the IMCI strategy promotes the accurate identifi cation of childhood illnesses in outpatient settings, ensures appropriate combined treatment of all major illnesses, strengthens the counselling of caretakers, and speeds up the referral of severely ill children. In the home setting, it promotes appropriate careseeking behaviours, improved nutrition and preventative care, and the correct implementation of prescribed care.
Why is IMCI better than single-condition approaches? Children brought for medical treatment in the developing world are often suffering from more than one condition, making a single diagnosis impossible. IMCI is an integrated strategy, which takes into account the variety of factors that put children at serious risk. It ensures the combined treatment of the major childhood illnesses, emphasizing prevention of disease through immunization and improved nutrition.
How does IMCI accomplish these goals? Introducing and implementing the IMCI strategy in a country is a phased process that requires a great deal of coordination among existing health programmes and services. The main steps involve: ■ Adopting an integrated approach to child health and development in the national health policy. ■ Adapting the standard IMCI clinical guidelines to the country’s needs, available drugs, policies, and to the local foods and language used by the population. ■ Upgrading care in local clinics by training health workers in new methods to examine and treat children, and to effectively counsel parents. ■ Making upgraded care possible by ensuring that enough of the right low-cost medicines and simple equipment are available. ■ Strengthening care in hospitals for those children too sick to be treated in an outpatient clinic. ■ Developing support mechanisms within communities for preventing disease, for helping families to care for sick children, and for getting children to clinics or hospitals when needed.
What are the 3 main components of the strategy? The strategy includes three main components: ■ Improving case management skills of health-care staff ■ Improving overall health systems ■ Improving family and community health practices
45 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
within IMCI. In 1999 WHO commissioned an advise on disclosure of the child’s HIV infection extensive review that concluded that combined and support for development (based on the Care psychosocial and nutritional interventions to for Development module), advice on linking improve children’s growth and psychological children and their caregivers with relevant sup- development have synergistic effects that exceed port and guidance in the community and other the separate benefi ts of psychological interven- sectors. tions to support psychological development and nutrition interventions to support physical Example of table from IMAI/IMCI growth (Pelto et al, 1999). This was followed by Chronic HIV Care a second comprehensive review that stressed Encourage and help caregiver to: the importance of children’s care in the context of childrearing relationships with supportive Assess • Family needs: psychological needs, social with special attention to stigma, fi nancial adults, and the way in which care, including needs linked to lack of income due to illness affection, support and stimulation, was affected and death, practical needs particularly by social and economic circumstances (Richter, concerning child care, legal assistance 2004b). Building on the reviews, and knowledge • Specifi c needs of children in the family: gained from UNICEF’s Care Iniative (1997), an quality of care and support; state of health additional module, Care for Development, was and nutrition; exposure to developmental developed for inclusion in the IMCI algorithm.1 stimuli such as communication, play, The module targets vulnerable young children school, learning, recreational activities; psychological conditions linked to fear and and aims to improve the knowledge and skills of understanding of the family member’s HIV caregivers to: status; role in caring for parent/siblings and providing for the family; exposure to ● Strengthen active and responsive feeding to discrimination, exploitation, abuse, loss of improve nutrition and growth inheritance rights. ● Introduce activities to improve interactions • Availability of further adult resources in with children, to stimulate growth and family or community to fi ll gaps and/or learning, and to promote responsive care for provide continued care and support for the children. children’s health • Caregiver’s own support and guidance ● Engage in specifi c play and communication needs, in relation to issues such as activities to help children move to the next disclosure, children’s rights, cooping with steps in their development. stigma, accessing available services. In 2003, WHO launched an integrated manage- Advise • Disclose HIV status of a family member to children gradually and in an age-appropriate ment approach to chronic HIV care with ARV way therapy and prevention, as part of efforts to support the 3by5 scale-up. IMAI (the integrated Agree • Develop a plan addressing assessed needs. management of adolescent and adult illness) was • Make sure children are involved in plans for developed to complement the IMCI materials. The their future. IMCI was modifi ed to better address case detec- Arrange • Link with relevant support and guidance tion and HIV testing of HIV-infected infants and services available in the community, such their follow-up care, including co-trimoxazole as social welfare, income generation activities, home care, peer support, prophylaxis. The IMAI/IMCI materials support a spiritual support, organizations of PLWHAs. transition from exclusively acute to good chronic HIV care, based on forming clinical teams and • Link with relevant services for children, 2 such as schools, day-care, educational, empowering clients in self-management. The artistic and recreational activities, peer paediatric section of the IMAI/IMCI Chronic HIV groups for older children, child-counselling, Care with ART and Prevention guideline module services providing school fees, community includes simplifi ed, operationalized guidelines volunteer support services, meals for for psychosocial support, including age-specifi c children.
These guidelines are accompanied by a short 1 http://www.who.int/child-adolescent-health/New_ training course which can be taken by nurses or Publications/IMCI/IMCI_Care.pdf. Accessed July 2005. 2 To access IMAI/IMCI go to http://www.who.int/hiv/ other clinicians on the clinical team. The course capacity/en can also be taken by PLHA or other lay providers
46 HEALTH SECTOR RESPONSES TO CHILDREN AFFECTED BY THE HIV/AIDS EPIDEMIC
who have been trained and paid to join the clini- to disease prevention and health promotion. Such cal team to provide counselling services and to an approach is highly relevant to children living in link with community activities or by community communities affected by HIV/AIDS, and includes health workers. economics and health, food security and nutri- tion, literacy and education, psychological factors Advantages of the health sector in relating to well-being, rehabilitation and child spearheading multi-sectoral child- development, and preventive aspects including focused HIV/AIDS responses health promotion and the importance of water and sanitation to health. The foregoing discussion builds the case for HIV/ AIDS health interventions to move beyond vertical A strong emphasis on children, including programmes if they are to effect lasting changes vulnerable and young children for children living in affected communities. Cur- rently, health services are primarily focused on The health sector embodies a commitment to scaling up ART and PMTCT programmes. Lessons providing services to diffi cult-to-reach popula- learned over the last three decades demonstrate tions, and does this with considerable success, for the importance of a public health approach and example, with respect to immunization. Maternal of engaging with civil society and communities and child health services comprise more than half in order to bring sustainable improvements in of the workload of the health services and, more the healthy development of all groups of vulner- than any other sector, is in regular contact with able children living in communities affected children under 5 and their families. Despite this, by HIV/AIDS. In what follows, we outline the many children still do not benefi t from compre- advantages that the health sector, in general, and hensive and integrated care. The need to extend the World Health Organisation, in particular, have the reach of health services is the key theme of the in developing a comprehensive PHC approach to 2005 World Health Report: Make Every Mother and all categories of children living in communities Child Count. The report emphasis that “As child affected by HIV/AIDS. health programmes continue to move towards integration it is necessary to progress towards A holistic view of health that universal coverage” (WHO, 2005d, p12). accommodates multi-sectoral responses Considerable infrastructure WHO and its many partners, including in-country ministries of health, is committed to a holistic Ministries of health enter communities through view of health that goes beyond the treatment health centres and outreach workers. Although of illness. As reiterated in the Alma Ata Decla- the reach of health services is by no means com- ration (1978), WHO advocates an approach to plete, in general, they have more infrastructure health that is holistic and are better organised and coordinated with and that recognizes available referral options, than any other formal the importance of system of services in poor communities, including Advantages that the health underlying social, schools. The health sector also has a strong com- sector has in developing economic, religious mitment to a systems approach through district, a comprehensive PHC and cultural factors provincial, and national supervisory tiers. Policy approach to all categories and institutions. in the health sector is implemented in integrated of children living in Health ministries ways through these systems. The central govern- communities affected bring a considerable ment departments responsible for social services by HIV/AIDS. amount of experi- often do not have systems in place to coordinate ence of strengthening and integrate services, including those provided systems to support by the non-governmental sector. For this reason, children’s healthy development in communities they have been unable to control the proliferation affected by HIV/AIDS, and they also have com- of orphanages established to care for children parative advantages in relation to the responses affected by HIV/AIDS, even though institutionali- of governments and intergovernmental organisa- sation has been specifi cally excluded as an option tions. Public health professionals responsible in international and national policy documents. for the design of health systems come from a Ministries of health also have a comparatively discipline steeped in the multi-sectoral approach stronger commitment and capacity for monitoring
47 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
and evaluation which, in turn, is supported by Summary health information systems and research. There is an important link between early child- hood and HIV/AIDS in view of the profound Health is one of the most important impacts of the epidemic on young children’s sur- ministries within central government vival, health and development. Until recently, the The health of the population is critical to national health sector paid little attention to the situation socio-economic development and Ministries of of children living with and affected by HIV/AIDS Health control substantial budgets, sometimes up in sub-Saharan Africa. It also had little involve- to 16 per cent of total government expenditure. ment in international initiatives to improve the The health sector is well-situated to infl uence healthy development of children by systematically agendas to improve children’s health and well- strengthening responses for children affected by being because it deals with a single national HIV/AIDS. government ministry or department. In turn, Recently, the health sector has engaged more departments of health have extensive reach into strongly in specifi c HIV/AIDS programmes in communities and interface directly with families developing countries through anti-retroviral treat- and children. ment (ART) and prevention of mother-to-child Policies and strategies that are not followed transmission programmes with direct benefi ts through with implementation plans and training, to children affected by HIV/AIDS. Increased indicators, monitoring frameworks, budgets and fi nancing for HIV/AIDS provides an opportunity resource allocations are unlikely to be translated for both negative and positive effects on health into actions to care for and protect vulnerable care systems. Ministries of Health could use the children and risk remaining as assertions in state- additional resources to improve the capacity and ments of intent and guidelines. Having a policy increase the skills of health service providers is only one component in developing an enabling through strengthening infrastructure and health environment that supports and protects vulner- delivery systems. But there is also a danger of able children. The processes by which policies are increasing vertical ART programmes and reducing developed and the ways in which they become equity of health service provision. translated into effective actions that benefit The concept of primary health care, endorsed vulnerable children by states in 1978, is timely today. PHC’s com- are equally impor- mitment to equity, cost-effectiveness, multi- tant. The health sec- sectoral approaches, political commitment and In order to carry forward tor has considerable community participation are important counters the recommendations experience in these to vertical approaches to services delivery. It is made in this document, processes and needs critical that health interventions for HIV/AIDS considerable effort and to bring this exper- move beyond vertical programmes if they are to resources will have to go in tise to bear in efforts effect lasting changes for those living in affected to extending health services to support children communities. and improving their quality. living in communi- ties affected by HIV/ AIDS.
48 Chapter6 Systemic approaches to promote children’s healthy development
o move forward, it will be necessary to go justice, as well as participation and inclusion Tbeyond token, palliative remedies for children (UNESCO, 2002). EFA is compelling because it infected and affected by HIV/AIDS. To provide improves both the lives of individual children comprehensive multisectoral programs, govern- and the socio-economic well-being of countries. ments and international agencies need to develop Education gives a child a better chance for a national and regional blueprints for dealing with full, healthy and secure life. At the same time, children infected and affected by HIV/AIDS. it benefi ts nations because it improves health, While recognizing distinct local and national reduces poverty, increases labour productivity, issues, these blueprints should set guidelines and promotes civic participation (World Bank & and parameters for scaled up remedial efforts UNICEF, 2002). including distributing expertise across national Children living in communities affected boundaries and creating opportunities for com- by HIV/AIDS are at high risk of not attending munities to share lessons learned. school, performing poorly and not completing Agreement is growing that what is needed are their education. As a result of this they may be holistic, integrated responses to children living socially and economically marginalized during in communities affected by HIV/AIDS, rather their childhood and for much of their adult lives. than narrow HIV/AIDS-specific programmes There is consensus in the education sector that that target so-called AIDS orphans, or provide the best way of meeting the needs of children for only one aspect of children’s needs – broad affected by AIDS is through mechanisms that poverty reduction and empowerment strategies, achieve Education for All (UNESCO, 2002). food security, nutrition, access to health care and Some of the public programmes to achieve EFA education, early child care and development, and include the abolition of school fees, revision of home-visiting and the curriculum, school feeding, increasing the assistance to families number of teachers, improving the quality of who are struggling to education, and establishing community schools. … what is needed are cope (Dunn, 2005a). Non-governmental and community-based initia- holistic, integrated In the same vein, tives include income-generating activities at the responses to children living efforts to move closer household level, teacher counselling to support in communities affected to achieving the Mil- vulnerable children, and school fee subsidies by HIV/AIDS, rather than lenium Development for destitute children. Efforts to abolish school narrow HIV/AIDS-specifi c Goals (MDGs) have fees have been made in Uganda, Kenya, Malawi programmes that target given new impetus and Tanzania, with varying degrees of success, so-called AIDS orphans, or to multi- and inter- depending on fi nancial, planning and organiza- provide for only one aspect sectoral linkages and tional resources (Lockheed & Verspoor, 1991). of children’s needs … the importance of Figure 13 demonstrates the anticipated processes combining interven- of support needed to enable children in com- tions to maximize munities affected by HIV/AIDS to receive at least improvements, including with respect to maternal primary education. and child health (Fay et al, 2005). It has been proposed that schools should be There are precedents for such responses to nodes of care and support for vulnerable children provide care and protection for children. Primary in view of their reach into communities, their Health Care (PHC) and Education for All (EFA) enrolment and attendance rates, school feeding are examples of integrated approaches, based schemes and lifeskills programmes, as well as their on considerations of human rights, equity and collaborative relationships with health and social
49 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Figure 13. Flow of funds needed to support the primary education of children living in communities affected by HIV/AIDS (World Bank & UNICEF, 2002)
Funds from a donor/government
Funds received by executing agency
Funds provided to the NGO/CDC
School committee Community selection Foster family/household Income-generating committee project
Primary school (fees)
Orphans and vulnerable children Supervision by agency Fees for other children
Monitoring and evaluation
development agencies (Giese, 2003; World Bank linkages. Even at the & UNICEF, 2002; UNAIDS, 2004a). Though this onset of the AIDS Education and health, is an appropriate conduit for school-aged children epidemic, a nar- both essential services to and children enrolled and attending school, for row medical effort support children’s healthy preschool children, children out-of-school, chil- soon gave way to a development, are entry dren suffering psychological and mental health massive community points for government- impacts of parental illness and death, children liv- response that was community-family linkages. ing with HIV/AIDS, and disabled children, health largely driven by facilities and outreach services are better placed as those most affected nodes of care. Currently, there is a dearth of health by the epidemic, and facility-based models in sub-Saharan Africa that the same is happening in education. map community resources and coordinate with Health services occupy a unique niche that them to create integrated systems that provide enables them to lead innovative responses to for the holistic care and protection of vulnerable children living in communities affected by AIDS, children. This is despite the fact that such models in collaboration with a wide range of partners in are proposed in PHC, and in the later development government, in civil society and with communi- of comprehensive PHC, community IMCI, and ties and families. Health services have the most The Framework for the care, support and protec- far-reaching and frequent contact with children tion of vulnerable children. Such approaches are and their families in the countries worst affected particularly benefi cial to meet the psychosocial by HIV/AIDS – through antenatal visits to prepare needs of children living in communities affected women for childbirth and children’s healthy devel- by HIV/AIDS, not just orphans. opment, through PMTCT programmes, through Education and health, both essential services immunization, growth monitoring and sick child to support children’s healthy development, are visits to health centres, and through community entry points for government-community-family health worker and home-based care programmes.
50 SYSTEMIC APPROACHES TO PROMOTE CHILDREN’S HEALTHY DEVELOPMENT
Instead of attempting to respond only to orphaned HIV/AIDS and the Continuum of Care children through narrowly-focused health and psychosocial programmes, the health sector can In the early 1990’s, WHO’s Global Programme on strengthen the primary health care system, and AIDS advocated that care and support for people work through other systems, such as education, living with HIV/AIDS should be comprehensive to create a broad-based public health approach to – embracing psychological/spiritual, social and improve the health and development of vulner- medical dimensions – as well as integrated, able children. Many spontaneous programmes to with various providers offering a “continuum respond to children of care” (COC) responding to the clients’ many affected by war and needs (UNAIDS, 2000, p91; Osborne, 1996). The HIV/AIDS rely on continuum bridges a range of services, including … health centres could child protection or counselling and testing, clinical management, become nodes of care child welfare com- nursing care and community-based support. The for children living in mittees (Robinson, provision of care extends from the individual and communities affected by 2005). While les- the home to the hospital, through various levels of HIV/AIDS and, together sons learnt from care linked with discharge planning and referral with schools, spearhead these structures are networks, and returning back to the individual “Community Care not frequently docu- and the home – in a loop. WHO has promoted this Coalitions”. mented, the capacity continuum of care concept from a health services of health services perspective with voluntary counselling and test- could help these ing as the entry point (see Figure 14). coalitions achieve higher levels of organization, Though it is frequently stated that there should coordination and sustainability. Most importantly, be effi cient and effective referral mechanisms though, health centres could become nodes of care between various services and levels of care, the for children living in communities affected by reality is different. It is not at all clear how clients HIV/AIDS and, together with schools, spearhead move “across” the continuum. In relation to people “Community Care Coalitions”. living with HIV/AIDS and affected children, the linkage mechanisms for a continuum of care are defi cient. Specifi cally, they need to be improved
Figure 14. The WHO Continuum of Care
Primary health care Health posts Dispensaries Traditional Orphan care Community care Secondary District health care hospitals, HIV NGOs clinics, social/ Churches legal support, Youth groups hospice Volunteers
Voluntary counselling testing
Specialists PLHA and specialised Palliative The entry Emotional and point care facilities spiritual support Peer support Self care Tertiary health care Home care
51 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
within the health delivery system and in the com- more economically at district or clinic levels. In munity, between different levels of health services, Zimbabwe, patients with mild illnesses presented between the health sector and community-level directly to tertiary level institutions and different groups, and between different community groups. levels of institutions had similar mixes of diseases Responsibility for establishing and maintaining (Sanders et al, 1998). For example, 69% of visits to care networks are in most places poorly defi ned. a referral hospital in Cape Town by HIV-infected (Miller et al, 2005). patients were considered suitable for primary care (Metrikin et al, 1995). The main determinant of Continuum of care within government utilization of the different levels of health facility health delivery is the patient’s proximity to the facility rather than the nature of their illness and the need for more In most sub-Saharan African countries, the specialized management. capacity of health infrastructure does not meet needs. There is inadequate availability of out- Continuum of care between health patient and inpatient facilities, lack of trained centres and other groups and institutions health workers and incomplete drug distribution in the community systems, especially in rural areas. In addition, as described above, the continuum of care within the Home based care (HBC) programmes have prolif- health sector – the referral and communication erated throughout Africa in the past two decades mechanisms of the system – functions poorly and (Russell & Schneider, 2000). By 1993, there were targeting of specialized services is poor. at least 67 home care projects in Zimbabwe and by Primary health care clinics are the lowest level 1996, the Ministry of Health of Zambia estimated treatment facilities and aim to provide manage- there were over 100 home care projects (Blinkhoff ment for common and less severe illnesses. et al, 1999). Hospital-outreach HBC models were The accessibility of primary care clinics is an the fi rst to be established but these were costly advantage compared to secondary and tertiary and unable to provide the types of non-medical levels, especially for the management of chronic services needed by large numbers of clients in the diseases. For example, tuberculosis follow-up community. Five additional models of community rates have been found to be twice as high at home-based care (CHBC) programmes have been health centers compared to hospitals (Interna- developed. These are: tional Union of Tuberculosis, quoted in Morley ● NGO-based & Lovel, 1986). ● Faith-based Health care systems are designed through a ● Community-rooted continuum that involves referral to secondary ● Support groups for PLHAs (district) or tertiary (provincial) levels for special- ● Self-help groups (Ogden et al, 2004). ized diagnosis or management. Clinic-to-district referrals occur more frequently than district-to- Despite the proliferation of community HBC pro- provincial referrals, primarily because of trans- grammes, and community responses supporting port costs and staffi ng differentials, leading to vulnerable children, there have been few attempts increased dependence on a few central hospitals by health services to establish strong linkages based in major cities. Referral back to lower levels with community-based initiatives (O’Hare et al, for management of chronic medical conditions 2005). In a study of 21 health centres in South is uncommon, since clinics lack essential drugs Africa, all health and health workers may not be trained in the workers interviewed management of chronic diseases. In practice, acknowledged the Despite the proliferation throughout most of sub-Saharan Africa, there is importance of health of community HBC little formal communication or referral between outreach services, programmes, and the different levels. Public health care systems but only five were community responses are urban- and curatively oriented, with over operating such out- supporting vulnerable 50% of expenditure in most countries spent in reach, due largely children, there have been urban hospitals often serving less than 15% of to lack of transport few attempts by health the population. Tertiary level institutions are or staff. There were services to establish strong more expensive because they provide specialized few examples where linkages with community- services, though many patients seen at tertiary or health centres were based initiatives. district levels could be treated as effectively and able or willing to
52 SYSTEMIC APPROACHES TO PROMOTE CHILDREN’S HEALTHY DEVELOPMENT
Figure 15. Care provision for people Faith-based care at home: Integrated living with HIV/AIDS in Africa (Ogden et health system-community care for al, 2004) people with HIV/AIDS and TB in Zambia In 1993, Ndola Catholic Diocese established an AIDS Department in which home care was a priority. The area has 23 townships with a Unlinked family care population of some 400,000 people. By 1998, over 5,500 patients were registered with the programme and over 10,000 patients had received assistance in the previous fi ve years. Person/s living Coverage was estimated to be 78 per cent with HIV/AIDS of chronically ill patients. The Department employs six full-time staff, including one doctor and one clinical offi cer. A total of 28 nurses work in the 23 compounds where Community the programme operates, with 10 being home-based care (CHBC) Family-based seconded by District Health Management health care Teams (DHMTs). In addition the programme is implemented by over 500 volunteers. The cost of the programme was around $5 per patient with over half the money being spent There is little communication and referral between facility- on welfare support (food, clothing, blankets based health care and community-based home care systems and bed sheets) or drugs and equipment. Other contributions by community members to households with chronically ill patients Continuum of care involving community included practical help such as cleaning groups and non-health institutions the house, washing clothes, fetching water, The continuum of care for PLHA and children collecting firewood and cooking meals. In affected by or living with HIV/AIDS is least addition to the Catholic Diocese and Ministry developed in relation to non-health government of Health through its DHMTs and hospitals, institutions (such as schools, agricultural services the programme also involves local NGOs and justice systems) and community groups and community groups, the World Food (including CHBC and programmes for vulner- Programme, local businesses and the Victim able children, faith communities, preschools and Support Unit of the Zambian Police (Blinkhoff crèches, cooperatives, credit associations, and et al., 1999). self-help PLHA support groups). In South Africa, where teachers were sensitive to the vulnerabili- ties of their learners, they often felt frustrated by provide support, food or medical supplies to the inadequacy of options for referral to other home- based organizations or volunteers (Giese services or lacked knowledge about who to refer et al, 2003b). children to, and what services were provided by Studies of care provision for PLHA in Africa the state and the non-governmental sector (Giese suggest that around 90% of HIV-positive people et al, 2003b). do not access basic health care from health The HIV/AIDS epidemic has led to a remarkable facilities, due to lack of resources, lack of trust proliferation of community home-based care pro- in the system or other reasons (UNAIDS, 2002, grammes, support groups for people living with quoted in SCF, 2004; World Health Organisation, HIV/AIDS and initiatives to support vulnerable 2001). In addition, only 12% of people living with children. In addition, “community safety nets” HIV/AIDS receive support from a community made up of existing groups and individuals within home-based care programme (UNAIDS, 2004b). communities have modifi ed their approaches in Figure 15 depicts the limited overlap between response to needs highlighted by the HIV/AIDS community home-based care programmes and epidemic (Foster, 2005b). A study from Malawi health services. asked members of rural communities to describe care and support structures that existed for their
53 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Table 3. Perceived effi cacy of existing support structures
Agency Strength Weakness Agricultural Always around the village Extension workers Provide information to women and children on farming methods Provide loans for fertilizer (especially for tobacco) Health surveillance Get along well with the assistants Do not visit the community often assistants Providesome useful information Community development Encourage the community to build schools Do not visit the community often assistants and health centres Register orphans but do not return NGOs (e.g World Vision, Bring development to the community Register orphans but don’t come back Save the Children) Traditional healers Tell you who is bewitching you Bring enmity among kinsmen Understand the community Cannot cure AIDS Effective if someone wants luck Traditional birth Readily available to help deliver children attendants Church committees Help caring for the sick and say prayers Do not help with orphan care Grocery and other stores Sell over the counter drugs Don’t educate people on proper use of drugs Health facilities (hospitals Care for the chronically ill Situated too far from the community and clinics) Doctor examines patient Don’t really tell you what is wrong No drugs, or only give “aspirin” or “fansidar” for every illness children. Table 3 illustrates the strengths and weaknesses of various groups and individuals Quotes from home-based carers that play a role in supporting CCA (Cook et al., (Giese et al, 2003) 1998). “We don’t support children as such. We don’t The reality of the continuum of care at commu- care for the children, we just care for adult nity level is that concerned groups and individuals patients” are identifying increasing numbers of vulnerable children, including some who are infected with “It is not part of our institution to look for HIV. Volunteers and staff of child-oriented organi- children with TB or HIV/AIDS” zations are placed in the impossible position of “We never focus on children, we hope that having to respond to the overwhelming numbers other organisations are focusing on children of sick children and adolescents, in the absence … We think like that. We hope, but it doesn’t of any clear recognition, resources or structures seem to work like that.” within which illness and vulnerability, and their consequences (medical, social and emotional) can be managed. by AIDS. HIV/AIDS service providers, such as home-based carers, health workers and teachers, Continuum of care and children must be encouraged to view every contact with a affected by HIV/AIDS – Rethinking the child or a caregiver as an opportunity to identify, Continuum of Care assist with, or prevent child vulnerability. Most community home-based care programmes An analysis of the continuum of care for CLHA and support groups for people living with HIV/ recognised that most vulnerable children affected AIDS focus on adult illness, and seem to fail to by or living with HIV/AIDS are being identifi ed recognise that sick adults are surrounded by and cared for by community groups outside the vulnerable children. Many programmes that do health sector (see Figure 16). There are few, if any, focus on children, limit their response by provid- structures and networks to ensure that vulnerable ing aid and support only to children orphaned children are assessed with a view to meeting their
54 SYSTEMIC APPROACHES TO PROMOTE CHILDREN’S HEALTHY DEVELOPMENT
Figure 16. Extending the continuum of care for children living with HIV/AIDS (Miller et al, 2005)
Entry points Provincial hospital
VCT centre District hospital
Primary care clinic
Village community and Community-based development workers organizations and NGOs
CLHA and CHBC and OVC families programmes
Village community and Community-based development workers organizations and NGOs
VCT centre
needs in a holistic way through the provision of a seamless system of care and support at institu- Just as children’s health was a precipitating factor tional and community level. The issue of children leading to advances in the primary health care affected by HIV/AIDS provides a unique oppor- movement three decades ago, so also can children tunity to advance the recently refi ned concept affected by HIV/AIDS can serve to advance notions of “comprehensive primary health care”. Just as of integrated care activities between health services children’s health was a precipitating factor leading and community structures with holistic responses to advances in the primary health care movement combining medical, social, psychological and three decades ago, so also can children affected spiritual support for vulnerable children. by HIV/AIDS can serve to advance notions of integrated care activities between health services and community structures with holistic responses combining medical, social, psychological and spiritual support for vulnerable children. All are examples of systematic efforts to improve children’s outcomes on a large scale. In developing countries worst affected by Summary the AIDS epidemic, the health sector has the Given the magnitude and duration of the AIDS furthest reach and most frequent contact with epidemic, narrow interventions to support chil- young children and their caregivers through, for dren need to give way to holistic approaches that example, antenatal care, immunization and sick strengthen the systems on which children’s health baby services. Through outreach activities, such and development depend. In addition to families as community health workers and home-based and communities, health and education services care, health services could become nodes of care can be entry points for state-community-family for the organization of a continuum of community linkages. Primary Health Care and Education for services for affected children and their families.
55 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Chapter7 The role of the health sector in strengthening support systems for children
he health sector in general, and WHO in par- 2. Implementing a public health approach Tticular, has a long history in programmes to Public health efforts seek to attain health and strengthen health, school and community efforts well-being for the population as a whole, and to prevent and treat illness, support vulnerable to develop cost-effective interventions in areas children and promote their growth and devel- that represent the largest burden of ill-health, opment. These programmes include, amongst disability and impediments to human develop- others, advocacy directed at governments and ment, rather than targeting specifi c sub-groups aid agencies, research, product development, of children. It does so by applying a systematic the application of model to ensure that programmes are relevant the programme and effective in addressing major health issues. development cycle The model moves in a cycle from research to The health sector has a long to test and evalu- development to implementation to evaluation. history in programmes to ate new initiatives, This approach to programming, to ensure that strengthen health, school norm-setting for actions are based on the best available scientifi c and community systems to best practice, creat- evidence from a wide range of disciplines, is a prevent and treat illness, ing bridges between specifi c strength that WHO brings to efforts to support vulnerable children health centres and assist children living in communities affected by and promote their growth communities, and HIV/AIDS. and development. supporting in-coun- try implementation. 3. Increasing children’s access to health serv- In these efforts, ices many valuable les- Like education, health initiatives strive towards sons are available to enable the health sector to universal coverage, thus spearheading the reali- drive and coordinate responses to the needs of zation of some of the most fundamental human children in communities affected by HIV/AIDS. rights as incorporated into the Convention on the Experience available to the health sector Rights of the Child (CRC) and the African Charter includes: on the Rights and Welfare of the Child. 1. Promoting a holistic view of health and A commitment to development universal access to Like education, health WHO has long advocated that health is not merely care is the central initiatives strive towards the absence of disease or infi rmity, but the state of theme of the 2005 universal coverage, thus complete physical, mental and social well-being World Health Report spearheading the realization (1948). This defi nition frames a holistic view of Make Every Mother of some of children’s most children’s health and development, a necessity and Child Count. fundamental human for an adequate response to children in com- To realize this, it is rights … munities affected by HIV/AIDS. Poverty, income recognized that a and gender inequalities and lack of access and continuum of care opportunity are major causes of ill-health, and a must be established, covering the full age range public health approach takes these into account of children from conception to adulthood, and in addressing causes and solutions to ill-health requiring strong cooperation between health and poor development. services, on the one hand, and households and communities on the other.
56 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
4. Using strong health services as a platform Improved nutrition for risk reduction and health promotion focusing on breast- The established leadership Health services provide a platform and vehicle for feeding, young child the health sector has in a wide range of related initiatives. For example, feeding practices, improving nutrition to antenatal care provides opportunities also for management of pro- promote children’s healthy other health programmes, such as HIV/AIDS pre- tein-energy malnu- development needs to be vention and treatment, family planning, efforts to trition, micronutri- used to benefi t children reduce violence against women, and preparation ent supplementation affected by HIV/AIDS. for good child care. All of these efforts contribute (iodine, iron, Vita- to improving the health of both women and chil- min A, and zinc), dren. In the same way, maternal and child health emergency nutrition services, outreach health programmes, and home- to support displaced populations, food aid to based care, can all be used to initiate, support and address widespread hunger, and food and nutri- coordinate community-based efforts to provide tion policy, including the impact of HIV/AIDS on care and protection for vulnerable children. food security, are all areas in which there is long experience. The established leadership the health 5. Working with schools sector has in improving nutrition to promote The health sector has initiated and collaborated children’s healthy development needs to be used on a range of school programmes including school to benefi t children affected by HIV/AIDS. health services, child-friendly and health-promot- ing schools, teaching training programmes and, 8. Building bridges between health services more recently, FRESH (Focusing Resources on and households Effective School Health: A FRESH Start to Improv- The success achieved in reducing child mortal- ing the Quality and Equity of Education). These ity due to diseases such as diarrhoea and acute initiatives have been driven by recognition of the respiratory infection demonstrated not only the inter-relationships between health and education, development and availability of effective drugs and the opportunities schools provide to improve and the benefi ts of training health providers, but the health and well-being of young people. also the necessity and capacity of health serv- FRESH is built on many of the principles recom- ices to establish successful collaborations with mended for interventions for children affected caregivers, households and communities. To be by HIV/AIDS – partnerships between sectors and effective, caregivers need, amongst other things, the active engagement of children in addressing to understand and use oral rehydration fl uids, the problems that affect them and the solutions continue to feed young children during illness, devised to assist them.1 and recognize symptoms that necessitate visits, and return visits, to a health worker. IMCI and 6. Working with civil society organizations Community IMCI both recognize the important (CSOs) roles that caregivers, families and other sections The health sector recognizes the vital role played of the community play in preventing disease and by CSOs in providing health services for women promoting children’s healthy development. and children (2005 World Health Report) through mobilizing political will to effective policy 9. Promoting the development of life skills of development, holding governments accountable children and youth for equitable access and service delivery, and Life skills programmes for young people have social mobilization efforts to improve children’s been developed in response to HIV/AIDS, as health and development. All of these are critical well as school health initiatives. Skills-based to expanding care and support for children in education for better health and development communities affected by AIDS, using the fi ve key recognizes that knowledge, attitudes, and values strategies of the Framework. are necessary for health promoting decisions and behaviours. These programmes also address 7. Focusing on nutrition and growth to pro- attitudes to gender equality, peer pressure and mote children’s development confl ict resolution, providing young people with Undernutrition remains the major cause of ill- opportunities to adopt values and behaviours health and mortality among young children. conducive to good health across the life span, not only for themselves, but also to protect the health 1 http://www.freshschools.org/whatisFRESH.htm and well-being of peers and partners.
57 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
10. Addressing mental health as a key aspect through Directly Observed Treatment (DOT) of health collaborators and Buddy Clubs. This climate is Mental health is a critical part of the overall well- ripe for health services to become part of, and being of people in low-income countries because in some cases give leadership to, broad-based of the effects of chronic stress associated with pov- community initiatives to support vulnerable erty, confl ict, displacement and loss. The PEIMAC children, particularly through Community Care programme (see Chapter 4.2) is a broad-based Coalitions. effort to promote the mental health and develop- Community-based Integrated Management ment of young children. Other efforts by the of Child Illness (Community-IMCI) is a health- health sector include adolescent mental health, based initiative that fi ts well with several other suicide and substance abuse prevention; stigma approaches discussed in this review – Compre- reduction, especially in relation to HIV/AIDS; hensive Primary Health Care, strategies outlined mental health to support adherence to medical in the Framework, and the concept of Community regimens; the integration of mental health into Care Coalitions. The foundations of Community general health care; mental health in emergencies; IMCI are not new. Rather C-IMCI aims to reen- and policy development to improve mental health, ergize efforts and strategies to reach vulnerable especially in poorly resourced countries. Efforts children and their families, as expressed in the to provide psychosocial assistance to children Alma Ata Declaration. As described by CORE affected by HIV/AIDS should also be integrated (Child Survival Collaboration and Resources into health services, education, and other pro- Group, 1996),1 what is required to improve child grammes to address other diffi culties occasioned health and development is the following: by the HIV/AIDS epidemic and poverty. 1. Closer links between health facilities and the communities they serve; 11. Adopting a life course approach to child 2. Improved care outside of health facilities; and youth development 3. Integrated promotion of key family practices A life course approach moves the focus beyond critical for child health and nutrition; child survival to optimal physical and psycho- 4. A multi-sectoral approach to child health and logical development from before birth through development. childhood and adolescence and into adulthood. The promotion of health and well-being in child- Integrated strategies hood has an impact on health and adjustment to improve children’s in later years, and damage caused in childhood health and well- Community-IMCI is a has lifelong repercussions on functioning and being recognize that health-based initiative that productivity. The health and development needs “the care children fi ts well with several other of children change as they move through the receive at home, in approaches discussed in this age span and public health interventions must their families and in review – Comprehensive respond to a changing agenda. Age-specific their communities Primary Health Care, interventions for children affected by HIV/AIDS is just as important strategies outlined in the are sorely needed, as is a concentration of effort on as the treatment Framework, and the the healthy development of young children, also available in health concept of Community as an investment in their future well-being. facilities” (CORE et Care Coalitions. al, 2002, p. 3). For The Framework sets out fi ve key strategies that this reason, some of can be brought into the work of the health sector, the world’s leading Ministries of Health, health services and outreach development agencies have joined forces to target activities. HIV/AIDS is driving a new set of rela- child health and development at the community tionships between health services and the com- level. In founding documents for a community munity. New client groups are accessing services arm of IMCI, it is argued that community-based previously tailored for women of reproductive age approaches offer a number of advantages, all of – men, grandmothers, older siblings, unrelated which are consistent with the principles outlined adults, and teachers are amongst those who might in The Framework. accompany a child for immunization or a sick child visit (Foster, 1998). The complexities of, and important of adherence to TB and ARV treatment have led to new coalitions with communities, 1 www.coregroup.org
58 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
A community-based approach: outlined in The Framework, and working through Community Care Coalitions, is the most appropri- ● “Involves people – by acknowledging the vital ate contribution that the health sector can make role of the immediate community in a child’s to the care and protection of children living health growth and development; in communities affected by HIV/AIDS. Efforts ● Adapts to community needs – by recogniz- to improve the psy- ing that priorities are best set by the people chosocial well-being involved; of children should be integral to these … the care children ● Builds on existing resources – by enhancing efforts. receive at home, in their community structures and expertise, including families and in their positive traditional systems of care; communities is just as ● Strengthens links – between health services Summary important as the treatment and the people they serve, making them a more The health sector available in health valuable community resource; has valuable experi- facilities. ence in programmes ● Avoids duplication – by working in harmony to strengthen health, with single focus health programmes, not in school and commu- competition with them; nity efforts to prevent and treat illness, support ● Builds bridges – between community groups, vulnerable children and promote their growth NGOs and the private sector, both within and and development. This is derived from, amongst outside the fields of health, from mother’s others, a holistic view of children’s health and support groups to positive living initiatives, development; a public health approach; working education and development; with other sectors, such as education, civil soci- ● Focuses on outcomes – identifying the key ety, and families; increasing access to services; practices needed by families to improve their emphasising health promotion and risk reduction, children’s health, while being fl exible enough including mental health; adopting a life course for countries and communities to adapt the approach and facilitating the acquisition of life practices; skills among children and youth. In particular, Community-based Integrated ● Is cost-effective – because it maximizes use Management of Child Illness (Community-IMCI) of existing resources and focuses on low-cost is a health-based initiative that fi ts well with interventions which have the greatest impact Comprehensive Primary Health Care, strategies on child health and development; outlined in the Framework, and the concept ● Is sustainable – because it is cost-effective, of Community Care Coalitions. Through these builds on existing structures and responds to mechanisms, the health sector can make an the needs and priorities of local people” (CORE invaluable contribution to the care and protection et al, 2002, p. 4).1 of children living in communities affected by HIV/ AIDS, especially by including efforts to improve Comprehensive Primary Health Care and Com- the psychosocial wellbeing of children. munity IMCI, adjusted to prioritise the strategies
1 www.coregroup.org
59 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
Chapter8 Conclusions and recommendations
hildren have not, to date, received due atten- lack of access to appropriate treatment. The great- Ction in the global effort to prevent, treat and est proportion of children born to infected parents ameliorate HIV/AIDS. The impact of the HIV/AIDS are, themselves, uninfected. In general, their epidemic is experienced most severely at the survival and development is precarious. Nonethe- household level because it severely exacerbates less, most of them will outlive their caregivers, poverty. The epidemic is having a progressive bearing a large portion of the burden of care for a and cumulative effect on children by depleting chronically ill parent. However, the greatest part their care resources through parental illness, of available resources and intervention efforts are death, destitution and an increased burden of being directed to orphaned children, not all of care on families. This is occurring in a context of whom are vulnerable. Many orphans, especially generally poor access to services and insuffi cient those who are in the care of close and affectionate support from governments and the international family need little additional assistance. community. In desperate attempts to be of assist- Only time heals the terrible experience of ance, uncoordinated and sometimes inappropriate losing a parent during childhood. The families actions are being taken to support vulnerable that take them in, however, have to stretch their children. Much of the current effort is being meagre resources among increasing dependents, directed to orphans, despite the fact that a much and are desperately in need of material, social larger number of children are deeply affected by and spiritual support. Many children are doubly the epidemic and in very diffi cult circumstances. disadvantaged by HIV/AIDS, co-occurring as Under these conditions, there is widespread it does with wide- consensus that strengthening systems to sup- spread poverty, as port children living in communities affected by well as confl ict and The families that HIV/AIDS is the best option for achieving popula- instability. There is take orphans in have tion-level improvements in children’s health, their a danger that pro- to stretch their meagre psychosocial well-being and their educational grammes that tar- resources among increasing development. The health sector is well placed, get orphans may dependents, and are through its systematic approach and infrastruc- inadvertently label desperately in need of ture that reaches into most affected communities children in damag- material, social and in developing countries, to lead multi-sectoral ing ways, undermine spiritual support. responses that facilitate the holistic care and spontaneous care by protection of children living in communities extended kin, mis- affected by HIV/AIDS. While it is acknowledged direct resources to that the health sector is, in many places, defi cient, children who may not need external assistance, its potential to play a key role is enormous. and overlook large numbers of extremely vulner- The lives of all children living in communi- able children who are not orphans. In the main, ties affected by HIV/AIDS are becoming dif- what is needed is improved access of all children fi cult. Amongst these, sub-groups of children and families in AIDS-affected countries to health, are affected in particular ways. These include education, social welfare, and economic strength- children infected with HIV, children living with ening to improve the health and well-being of the chronically ill parents, orphaned children, and child population. other categories of vulnerable children. Infected Community initiatives and extended kin children, especially young children, have received were the fi rst to respond to the needs of affected little attention to date, and most of them die pre- children, and continue to be in the front line. The maturely from poverty-related diseases as well as emergence of community-based care programmes
60 CONCLUSIONS AND RECOMMENDATIONS
is one of the outstanding features among responses are age differences in the kind of support children to the epidemic. These groups play a critical role require. The affectionate care of families and com- in easing the impacts of the epidemic, particularly munities is the only effective and sustainable way on children. Extended families absorb the largest of ensuring children’s well-being. Stand-alone portion of the economic costs of the epidemic on psychosocial interventions for children can be households, and effective mechanisms need to be seen as foreign and experienced as an imposition. developed to get additional resources to families They are also frequently too narrowly focused to and communities to enable them to continue to meet the needs of children identifi ed as vulner- support the worst affected children. The fact that able. For these reasons, there is agreement that families are absorbing the care of affected children measures to support children’s healthy growth does not mean, however, that they are doing so and psychosocial well-being should be incorpo- without tremendous diffi culty. The involvement rated into other programmatic responses to the of community and faith-based organizations has HIV/AIDS epidemic. The available evidence and enormous potential to alleviate suffering and need experience strongly cautions against specialized to be supported and expanded. psychosocial programmes for “AIDS orphans”. International agencies and governments have Lessons learnt in other fields of intervention been slower to generate responses beyond policy, indicate that efforts to promote children’s psycho- that match the size and time scale of the problems social well-being in the face of adversity require affecting children and families. What stands out is that care systems around the child be mobilized the Framework for the Protection, Care and Support and strengthened in of Orphans and Vulnerable Children Living in a World an integrated way. It with HIV and AIDS. This is a consensual, authorita- is especially impor- tive statement of strategy that takes into account tant to counter the A key strategy to support available knowledge and experience to date. institutionalization children’s psychosocial well- The Framework recommends a comprehensive of vulnerable chil- being is to promote care as approach to affected children, including efforts dren. Institutional part of their everyday life. to support children’s healthy development. In care does not ben- For this, caregivers and particular, the Framework draws attention to the efit, and can harm families need assistance importance of sustaining families and extended children. In addi- and support. kin in their key roles of caring for and protecting tion, it draws large children. Despite this, few resources are reaching resources away from families and communities, especially households efforts to support that are already on the edge of poverty. One of the families and communities who take in vulnerable major challenges facing efforts by international children. and local governments, donors and philanthropic To date, the health sector has paid little atten- organizations is the development of mechanisms tion to the situation of children living with and for channeling resources to grassroots organiza- affected by HIV/AIDS, especially young children. tions and to destitute families. Both anti-retroviral and prevention of mother- The distress experienced by children is well to-child programmes must be expanded. These recognized, as is the negative impact of the AIDS programmes have the potential to strengthen the epidemic on children’s development, particu- health care system, in general, and services for larly as a result of inadequate food, health care, children in particular. They especially need to be declining care and neglect, and exclusion from extended to promote the healthy development of education. While efforts to support the healthy young uninfected children who are living with development of children in communities affected HIV-positive parents. by HIV/AIDS are essential, these do not neces- In the current climate, there are clear advan- sarily require separate programmes to address tages for the health sector to lead a comprehensive children’s psychosocial needs. Support from primary care approach to children living in com- families and communities, and also from peers, munities affected by HIV/AIDS. These advantages enable children to cope with extremely diffi cult include a number of potentialities that must be circumstances. A key strategy to support chil- energized, including a holistic view of health dren’s psychosocial well-being is to promote care that accommodates a multi-sectoral response; a as part of their everyday life. For this, caregivers strong emphasis on children, especially young and families need assistance and support. children; and considerable infrastructure and Children have a multiplicity of needs and there reach, as well as infl uence on national agendas.
61 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
At a local level, health services, together with 2. Use the Framework to promote integrated education, could establish strong linkages with responses to children based on knowledge community-based initiatives to form Community and experience gained within the organiza- Care Coalitions for children made vulnerable by tion and by its partners the epidemic. The health sector has a long history ● The provision of substantial resources for in programmes to strengthen health, school and paediatric HIV/AIDS responses provides community systems to prevent and treat illness, an opportunity to strengthen the provision support vulnerable children and promote their of primary health care for all vulnerable growth and development. In particular, Com- children. However if not conceived within munity-IMCI is a health-based initiative that fi ts the broad strategies of the Framework, well with several other approaches deemed to be paediatric ART could develop into a verti- of benefi t to vulnerable children, including Com- cal programme that draws resources away prehensive Primary Health Care, the UNAIDS-led from the provision of comprehensive care Framework, and the concept of Community Care of children. Coalitions. What is needed is leadership from the ● The health sector, WHO and partners health sector for the development of integrated have accumulated relevant knowledge and models; tools for assessment, implementation experience concerning vulnerable children and evaluation; training programmes; and pilot in fi elds such as nutrition, mental health, projects, to take this forward. school health and life skills. Much of this The recommendations offered are that the knowledge and experience, including care- health sector plays the following roles in respond- ful evaluation where it has been done, needs ing to children living in communities affected by to be utilized to good effect to guide cur- HIV/AIDS: rent responses to children in communities affected by HIV/AIDS. 1. Give strong guidance to Ministries of Health ● Because many stand-alone psychosocial to lead a holistic response to children programmes for children in communities in communities affected by AIDS that is affected by HIV/AIDS are not informed by founded on the Framework. this experience, they are at risk of having ● Given the enormity of the threat to chil- to relearn lessons already well documented. dren’s health and development, and the These include the importance of peer leader- knock on effects of poor child health and ship in life skills programmes, supportive development to human and social well- psychosocial environments for children’s being productivity, it is imperative that the development, and mental health promotion reach and infl uence of Ministries of Health to reduce the need for psychiatric services. are used to champion the care and protec- The health sector should ensure that lessons tion of children. learned are made available to be incorpo- ● Ministries of Health have a comparative rated into community programmes. advantage to ensure that investments in the health and development of children are 3. Promote health centres as nodes of support, made as early as possible. working together with community initia- ● Ministries of Health should ensure that tives on the common agenda articulated by children feature prominently in National the Framework to support children and Strategic HIV/AIDS Plans and Poverty families. Reduction Strategy Papers. ● HIV/AIDS is reinforcing adaptations by the ● Ministries of Health should also strongly health sector by recognizing a broad range engage in the development and implementa- of health determinants, necessitating deliv- tion of National Programmes of Action for ery of services in communities as well as in Vulnerable children. health centres, and by reaching a changed ● The Framework should be used to ensure age and gender profi le of users, including that interventions driven by Ministries of men, the elderly and young people in tradi- Health to support children are directed tional maternal and child health services. to all vulnerable children in communities ● No single agency or organization can affected by AIDS and integrated into other provide services that encompass the broad programmes to promote children’s well- range of needs of children. Nonetheless, being. health centres are well situated to coordinate
62 CONCLUSIONS AND RECOMMENDATIONS
local responses for vulnerable children in communities to be the foundation of an view of their proximity to communities and effective scaled up response to children in frequent contact with young children and communities affected by HIV/AIDS. their caregivers ● WHO, UNICEF and partners are committed ● Given that many affected communities have the expansion of IMCI at the community responded to vulnerable children, health level, have already developed tools and centres should expand and extend outreach training, country level implementation programmes to identify and strengthen experience and are conducting evaluations existing community initiatives through of community IMCI. establishing collaborative care coalitions. ● This powerful body of programmatic ● Collaborative care coalitions should bring experience can bring considerable benefi ts together the respective strengths of health to efforts to promote the health and develop- services and community initiatives. Health ment of children in communities affected services can provide structure, training, by HIV/AIDS, and should therefore be used supplementary nutrition, treatment, and to provide a powerful vehicle by which to monitoring. Community groups can con- organize and align health sector contribu- tribute by identifying vulnerable children, tions to efforts to provide assistance and mobilizing voluntary activities, providing support to children and families affected flexible and rapid assistance to families by the AIDS epidemic. in crisis, and ensuring that families and children receive psychosocial, material Summary and spiritual support. In turn, these col- laborative initiatives can increase the reach, 1. Give strong guidance to Ministries of Health uptake and impact of health services. to lead a holistic response to children in com- ● A review should be undertaken of the pro- munities affected by AIDS that is founded on grammatic experience and the evidence on the Framework health service–community collaborations 2. Use the Framework to promote integrated and develop tools and training materials to responses to children based on knowledge and expand successful models. experience gained within the health sector and its partners 4. Strengthen the community component of 3. Promote health centres as nodes of support, IMCI and ensure that it used to organize and working together with community initiatives coordinate health sector responses to chil- on the common agenda articulated by the dren in communities affected by HIV/AIDS Framework to support children and families. ● The community component of IMCI is 4. Strengthen the community component of conceptually and strategically aligned with IMCI and ensure that it used to organize and The Framework. Both community IMCI coordinate health sector responses to children and the Framework consider families and in communities affected by HIV/AIDS.
63 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SUPPORT SYSTEMS FOR CHILDREN
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74 THE ROLE OF THE HEALTH SECTOR IN STRENGTHENING SYSTEMS TO SUPPORT CHILDREN’S HEALTHY DEVELOPMENT IN COMMUNITIES AFFECTED BY HIV AFFECTED COMMUNITIES IN HEALTHY DEVELOPMENT CHILDREN’S SUPPORT TO SYSTEMS STRENGTHENING IN HEALTH THE OF SECTOR ROLE THE
The role of the health sector in strengthening systems to support children’s healthy development in communities affected by HIV/AIDS
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