ACF Hunger Watch Hunger HIV 11-21-07

8/14/2019 ACF Hunger Watch Hunger HIV 11-21-07

1/72ACF International Network Hunger And HIV

From Food Crisis to Integrated CareHUNGER AND HIV

A HUNGER WATCH PUBLICATION


2/72ACF International Network Hunger and HIV 1

Published by:

ACF International Networ

Edited by:

Claire de Menezes

Authors:

Claire de Menezes, Susan Thurstans, Pamela Fergusson andNne Nutma

Photographed by:

Susana Vera

Series Editor:

Samuel Hauenstein Swan

ISBN No: 978-0-955773-1-8

Copyright ACF International Network 2007

HUNGER and HIV: From Food Crisis to Integrated CareFrom Food Crisis to Integrated CareHUNGER AND HIV


3/72ACF International Network Hunger and HIV2

Acnowledgements

T

his report is the work and commitment o a multitude o people over several years. The ACFInternational Network has enjoyed valuable working relationships with the Malawi Ministry oHealth, UNICEF, The National AIDS Commission, OPC and WFP who have strongly supported

our commitment and eorts in HIV and nutrition. We would also like to thank MACRO and the REACHTrust in Malawi or their collaboration in the community and the stigma study project. In particularwe would like to acknowledge those who have worked so hard to implement the projects and havecontributed greatly to this report; Susan Thurstans, HIV adviser in Madrid and previously HIV/nutritionadviser in Malawi; Pamela Fergusson and Jobiba Chinkumba, lead researchers or the study on severemalnutrition and HIV, and Nynke Nutma, HIV/Nutrition adviser in Malawi. The editor would like toacknowledge Christine Kahmann in the ACF-UK communication department and Samuel HauensteinSwan coordinator o Hunger Watch or their valuable assistance in creating this report. Above allo course, we would nally like to thank all those amilies and children who have participated in ourstudies and enabled us to make the progress we have reached so ar. We hope we will continue toimprove our service to them and make their lives easier and reer o the hardship o malnutrition.

Claire de Menezes, Editor & Author



ACF International Networ

A

CF is an international humanitarian network, working in 43 o the worlds poorest countries. Itcomprises o Action Against Hunger-UK (ACF-UK), Action contre la Faim-France (ACF-France),Accin contra el Hambre-Spain (ACF-Espaa), Action Against Hunger-USA (ACF-USA) and

Action contre la Faim-Canada (ACF-Canada).

The ACF International Network aims to save lives, especially those o malnourished children, and towork with vulnerable populations to preserve and restore their livelihoods with dignity. Our teams dotheir utmost to ensure that people are given access to the most basic o human rights the right to ood.International, non-political, non-religious and non-prot making, the ACF International Network helpsmore than 4.2 million people worldwide.

This report is part o the Hunger Watch series o publications. Hunger Watch is the research andadvocacy department o ACF-UK. The Hunger Watch team examines transversal actors such asconfict, market instability and HIV/AIDS, and analyses their linkages to acute hunger.



Contents

List o Figures 6Glossary 7Foreword 9

HIV general overview and the impact on nutrition 11ACF International Network and the link to HIV/AIDS 12Nutrition needs in HIV inection 13Impact on childhood mortality 14The AFASS Initiative 14

HIV/AIDS in Malawi 15Programme implications or the ACF International Network 18

HIV: a convenient shield for poor standards of care? 19Collecting the evidence and establishing the impact 20Results 21Regional and seasonal variation 22

Integrating HIV counseling and testing into nutritional care 23Goal 24Activities 24Uptake evaluation 25Service implications 26

Response to therapeutic treatment in HIV-infected children 27Study design 28Results 29Discussion 31Lessons or Community Based Management 32

HIV/AIDS, malnutrition, stigma and discrimination 33Background 34Objectives o the Study 34Findings 35Gender aspects 35

Challenges: the milk is not enough 35The impact o stigma: We have dierent blood 37What did I do wrong? 38Denial or multiple responsibilities? My other children at home 39How health workers and carers perceive HIV 39Understanding o HIV/AIDS and malnutrition among carers 40Conclusions 40



Life after nutrition rehabilitation follow-up of children discharged 42Nutrition status 42Family health 43

Access to services - limitations 44Income as a key actor 45Water, sanitation and hygiene 46Food, HIV and morbidity 46

Adult ART and Nutritional support 47Implementation 48Results 50Discussion 52Lessons learned 53Conclusion 54

Lining services reaching the communit and service providers 55HIV services in Malawi 56HIV awareness in the NRU 56Positive Living 56Linking services: developing a Reerral Manual 57Community level 57Clinic level 57Cotrimoxazole 57

Lessons learned and wa forward 59Advocacy and policy 60Programmes 60Commodities or service delivery 60Human capacity development 62Monitoring and evaluation 62Operational research 62

Conclusions and recommendations 63Reerences 67



List of Figures

Figure 1 Geographical distribution o HIV prevalence 21

Figure 2 Sta initiating HCT in NRU and SCs 2004 & 2006 25

Figure 3 Mortality among HIV positive children in NRU 29

Figure 4 HIV prevalence and mortality by site 30

Figure 5 Mortality by CD4% 30

Figure 6 Stunting data 13 months post-discharge o HIV- and HIV+ children 42

Figure 7 Multiple actors reducing access to health care or PLWHA 44

Figure 8 Results rom ART treatment at test sites by month 4, Malawi 50September - December 2005

Figure 9 Number o Patients per BMI range rom ART sites Malawi 51June-December 2005

Figure 10 Commodities or service delivery 61

Figure 11 Mainstreaming model 61



Glossar

AFASS Aordable, easible, acceptable, sustainable and sae eeding

ART Antiretroviral therapy

CHAM Christian Health Organisation o Malawi

CHBC Community home based care

CINDI Children in Distress, Zambia

CRS Catholic Relie Services

CTC Community therapeutic care

HCT HIV Counseling and Testing

HCW Home crat worker

HAS Health Surveillance Assistants

ICMI Integrated Management o Childhood Illness

MACRO Malawi AIDS Care and Resource Organisation

MOH Ministry o Health

MUAC Mid-upper arm circumerence

NAC National AIDS Commission

NRU Nutrition Rehabilitation Units

PLWHA People living with HIV/AIDS

QUAC Mid-upper arm circumerence or height

REACH Malawian NGO REACH Trust

RUTF Ready-to-use therapeutic ood

SAM Severe acute malnutrition

SC Stabilisation Centres

TB TuberculosisUNC The University o Carolina

UNICEF UN Childrens Fund

WFP World Food Programme

WHO World Health Organisation



Notes on Contributors

Claire de Menezes, is the Nutrition & Health Advisor or ACF-UK. She gained an MSc in PublicHealth in developing countries rom LSHTM and maintains her work as a paediatric nurse in the UK.She specialised in paediatric inectious diseases and HIV/AIDS in London beore starting work with

the ACF International Network in 2001. She has worked on nutrition and health programmes inSudan, Malawi and Zimbabwe and has driven the overall HIV/AIDS strategy or the ACF InternationalNetwork.

Pamela Fergusson is the Research Advisor or ACF-UK. During her our years with Action AgainstHunger she has managed a major research project in Malawi looking into HIV and severe malnutritionin children. Pamela is undertaking a PhD at the University o Liverpool, and works as a consultant andas a lecturer in nutrition at the University o Chester.

Nne Nutma is the HIV and Nutrition Advisor or the ACF International Network in Malawi. Nynketrained as Medical Doctor in the Netherlands, holds a diploma in Tropical Health (Netherlands Societyor Tropical Medicine), and is undertaking a Masters course in Maternal and Child Health (Universityo Cape Town). She gained experience in clinical care in the Netherlands, Zimbabwe and Malawi,including HIV care and treatment and management o malnutrition. She joined the ACF InternationalNetwork in 2006.

Susan Thurstans is the HIV, Health and Nutrition Advisor or ACF-Espaa, providing technicalsupport to missions in Arica, the Middle East and Asia. Susan specialised as a nurse working in HIVand sexual health in London and began working with the international network in 2003. She hassince worked on HIV and nutrition programmes and research in Malawi and contributed to the overallHIV/AIDS strategy or the ACF International Network.



Foreword

I

n 2001-2 Southern Arica experienced serious ood shortages, the causes o which were complex.In the early months o 2002 the Government o Malawi called a Food Emergency and requested thehelp o outside agencies. ACF International Network was invited by the lead agencies o the Ministry

o Population and Health and UNICEF to coordinate training and care in Malawis widely scatteredNutrition Rehabilitation Units (NRU).

This report describes some o the work that The ACF International Network and partners have carriedout in Malawi over the intervening years. It illustrates how the many teams - both governmental andnon governmental - involved in delivering emergency nutrition programmes were able to work incollaboration to develop a better understanding o country-specic causes o malnutrition and to adaptinternational treatment protocols to meet local circumstance.

Whilst those working in Malawi beore the Food Emergency were aware o the impact, both directand indirect, o the Southern Arica HIV/AIDS pandemic on the health and nutritional status o childrenand amilies, the complex interactions between HIV inection, nutrition and ood security were initiallyperplexing to outside agencies as published literature was at that time was limited to a number osmall but signicant research studies not widely accessed by the wider nutrition world. The newlyarrived eld workers however were quick to recognise the dierences to other emergency eedingprogrammes, particularly the high mortality rates and slow recovery o children with HIV disease.They recognised the importance o developing linkages between nutrition programmes, HIV treatmentand social care programmes. Nutritionists soon became powerul advocates or the easier access orchildren and parents to HIV counseling and testing and later to ARV treatment programmes.

In addition the ACF International Network team undertook major training programmes or health

sta at all levels. They were able to introduce the newly revised Malawi National guidelines or themanagement o severe malnutrition to NRU countrywide and thereater to stringently monitor outcomes.They helped in the reurbishment o old NRU and helped ensure supply lines o ood and drugs tothe ront line teams. They later moved to preventative work and established and revitalised nutritiongardens.

Malawi has been blessed by two recent good harvests, its HIV treatment programmes are slowly beinglinked with NRUs in high prevalence HIV areas and it now has a cadre o health workers trained tomanage nutrition emergencies. This paper relates some aspects o this work and demonstrates thepositive impact o collaborative working by agencies against the background o a strengthened healthsystem.

Anne NesbittFormer Associate Proessor,Department o Community Health, College o Medicine, University o Malawi



HIV: general overview and the impact

on nutrition



HIV: GENERAL OVERVIEW AND THE IMPACT ON NUTRITION

ACF International Networ and the lin to HIV/AIDS

The ACF International Network currently intervenes in 43 countries around the world, withprogrammes which directly or indirectly tackle hunger and malnutrition. This is done through

specialised eeding programmes, the provision o ood aid, conducting nutrition surveys anddeveloping surveillance systems to guide nutrition interventions and also through addressing theunderlying root causes o hunger and malnutrition. Our specialised areas o intervention are innutrition, ood security, water/sanitation and health care, as well as programmes that aim to improvethe quality o services provided by national and local authorities, or example Ministries o Health,Agriculture and Social Welare, through capacity building. The ultimate aim o all programmes is toenable beneciaries to regain their autonomy and sel-suciency as soon as possible.

As part o the wider humanitarian community, the ACF International Network is increasingly active intrying to reduce the impact that the pandemic is having on the populations with which we work. In thetreatment o severe malnutrition, HIV is challenging the traditional approaches as more children andcarers present with severe orms o complicated malnutrition related to HIV and associated tuberculosis(TB). HIV/AIDS is not only a health issue, but has a proound impact in many spheres: political, social,human, environmental, economic and inrastructural.

The impact o HIV on malnutrition was highlighted or the ACF International Network during the oodcrisis in southern Arica in 2002/2003. This spurred the organisation to consider how programmingcould be better adapted in the HIV context. Whilst our responses have started with the treatment issuesin the nutrition sector, it is recognised as essential to address also the pandemic at the earlier stages oprevention and mitigation. A large amount o literature exists on the various impacts o the pandemic,and ways in which humanitarian practitioners should take this into account, but the challenge is

to translate this into practice and prioritise the needs. The situation requires the ACF InternationalNetwork to re-examine traditional responses to hunger and malnutrition and mainstream HIV/AIDSthroughout our country programmes. Our aim is to both prevent and treat malnutrition whilst enablingHIV inected and aected people to maintain the best quality o lie they can, or as long as they can,through the added benets brought about by optimal and appropriate nutrition, as a part o theiroverall HIV treatment package.

This report outlines the work that the ACF International Network has done in Malawi addressingnutrition responses to HIV/AIDS. It provides initial evidence that HIV is indeed an important actor inthe cause o severe malnutrition and presents our operational research looking at the response o HIV-inected patients to therapeutic eeding. The research aims to help provide answers to the questions

surrounding aspects o care that may need change or adaptation to best suit the needs o those inectedwith HIV and suering severe malnutrition. This is ollowed with illustrations o our complementaryactivities that have been implemented to provide a more complete package o care addressing childand adult nutrition in light o the HIV/AIDS crisis in Malawi.

The report aims to give an overview o programmatic approaches, which, in a technical eld that isconstantly evolving with new inormation, oer a valuable platorm rom which to learn and take urthersteps orward. Results are not presented here in scientic ormat with ull methodologies and statisticaldetail such as condence intervals, but this inormation can be made available on request. The aim ispurely to provide an outline o some approaches in nutrition and HIV, the dierent challenges we ace

and also the positive aspects that can encourage urther development and progress in this eld. Withinthe report we consider the dierent challenges aced by both children and adults.



The number o people living with HIV/AIDS (PLWHA) worldwide is now approximately 40 million,with southern Arica suering the highest number o casualties. Across the globe, AIDS is responsibleor an increasing number o deaths each year. In 2005, an estimated 2.8 million people died o AIDS,380,000 o them children. In the same year, an estimated 2.3 million children remained living with theHIV virus, and an estimated 15 million AIDS orphans ace serious threats to their ood security, accessto healthcare and education, greatly increasing their risk o malnutrition1.

Globally, children under fve years o age account or one in six AIDS-related deaths andone in seven HIV inections. As we enter the third decade o the epidemic, a child dies oan AIDS-related illness every minute o every day, and a young person contracts HIV every15 seconds2.

Mother-to-child transmission (MTCT) o HIV accounts or the vast majority o children who are inectedwith HIV. In the last two decades, beore the large roll out o prevention o mother to child transmission(PMTCT) programmes, approximately 30%-40% o HIV inected women transmitted the virus to theirnewborn babies3. These children have contracted the virus through vertical transmission, either in thewomb during pregnancy, during the period o delivery or rom being exposed to the virus over the

period o breasteeding. Many o them will suer rom malnutrition at some point in their lives, eitheras a direct physiological consequence o the virus, or rom socio-economic eects rom the impact othe virus at household level.

Malnutrition and HIV inection are undeniably linked and together present a serious humanitarianand public health challenge in Southern Arica4. In countries that already suer the chronic burden omalnutrition, the added impact o HIV, which covers largely similar geographical areas, is increasingthe complexity o patterns o malnutrition despite steps being taken to address the common causalactors. It is now well documented in several countries with high national HIV prevalence that thereis indeed a higher proportion o HIV inected children among those admitted or severe malnutrition

in comparison to the HIV prevalence in the national population o a similar age group

5,6,7,8

. To date,country programmes to address severe malnutrition in childhood have been largely separate romHIV/AIDS treatment and care initiatives. Programmes addressing adult malnutrition are ew. However,with the roll-out o Antiretroviral Therapy (ART) largely due to resources rom the Global Fund, thereis increasing need or integration o HIV and nutrition services, targeting on both population andindividual basis. Adults as well as children must be reached, combining dierent approaches ortargeting. Nutrition programmes provide an excellent platorm or HIV awareness and the promotion othe benets o knowing ones HIV status in relation to the prevention o malnutrition and the associatedrisk o mortality.

Nutrition needs in HIV infection

Food o course is a undamental need or everyone, but HIV positive children and adults have specialnutritional needs. They need more energy to cope with extra losses during episodes o inection andhigh viral replication, and must ensure a balanced diet to cover or common micronutrient decienciesassociated with HIV inection9. For those on ART, a balanced diet is essential to aid the absorption,distribution and excretion o the drugs to maintain optimal levels or successul therapy. Surprisingly,having enough ood and the right kind o ood has been a long overlooked remedy in the ght againstHIV/AIDS but is now thankully rising on the international and public agenda. Many initiatives arenow in place at community and regional level. In May 2007, the second Eastern and Southern AricaRegional Workshop or Nutrition and HIV was held in Nairobi to support national governments tointegrate nutrition and HIV in one holistic package o care. It is now internationally recognised that asimportant as drugs and education are to combating HIV/AIDS, ood is a primary deence that enablespeople to maintain healthier and more positive lives and must be included as an essential componento HIV services.



Impact on childhood mortalit

For HIV positive children in under-resourced countries, there is o course an increased risk rom thecommon childhood diseases that can afict all children, particularly those under ve. Most childrensuer rom childhood illnesses, with the risk and outcome o inection oten shaped by geography,

poverty, socio-economic status and levels o immunity; the same actors directly linked with bothmalnutrition and HIV inection10. Although inectious diseases such as respiratory tract inections,diarrhoea, malaria, and measles are major killers o children, malnutrition is one o the most commonchildhood illnesses, contributing directly or indirectly to 60% o the more than 10 million child deathseach year11.

One o the key barriers to common childhood inections and early childhood malnutrition is o coursebreasteeding12. With early HIV prevention messages highlighting the transmission risk o HIV throughbreast milk, the culture o breasteeding, the single most eective barrier against childhood mortality,has been threatened leading to increased risk o malnutrition and mortality in inants born to HIVpositive mothers13,14.

The Affordable, Feasible, Acceptable, Sustainable and Safe Feeding (AFASS)Initiative

Due to the risk o HIV transmission rom mother to child during the breasteeding period, early publichealth messages supported the use o ormula eeding to prevent transmission.15 The emphasis wasto recommend breast milk substitutes and only to breast eed i an aordable, easible, acceptable,sustainable and sae milk alternative was not available. In reality this meant having a reliable incomeor ormula milk, and everything needed to support sae practice such as sae water, uel and resourcesor sterilising, or up to two years. In resource limited settings this was a high expectation, and the

introduction o ormula eeding into breasteeding cultures with poor levels o resources led to anincrease o gastro-intestinal inections and mortality in inants and young children16. Steps havenow been taken to address this situation with clearer messages emphasising the superior benetso breasteeding in under-resourced settings and easily-understood messages on what AFASS reallyentails.17. However, the earlier messages remain in the public domain, and it will take time or the ullunderstanding o the balance o HIV transmission versus mortality risk to be clearly understood by boththe public and health workers.

The progression o HIV inection is dierent in children rom that seen in adults, with children having amore rapid deterioration to AIDS increasing their malnutrition risk. Studies that have been done lookingat natural survival in childhood HIV inection show approximately 20% will have rapid progression

o disease and die by the age o 12 months o age; 50% will die by the age o three and just a smallproportion (



HIV/AIDS in Malawi



HIV/AIDS IN MALAWI

With a Gross National Income per capita o 170 US dollars per year (UNICEF 2006),Malawi is amongst the poorest countries in the world. Poverty is one o the major underlyingcauses o chronic ood insecurity in Malawi; malnutrition particularly aects vulnerable

groups such as women, children and those aected by HIV/AIDS. Malnutrition levels in Malawi

have remained largely static or the past decade. In December 2005 the Ministry o Health (MOH)conducted a national nutritional survey showing an average o approximately 4% o children below5 years o age with severe acute malnutrition and 6% with moderate acute malnutrition. The MalawiDemographic and Health Survey 2004 showed that 48% o the children in Malawi are stunted, anindicator o chronic malnutrition. Malawi traditionally experiences a hunger period rom Decemberto April, which leads to a yearly peak o malnutrition around February. Recent crises due to droughtoccurred in 2002-2003 and again in 2005-2006. From December 2005-April 2006 nearly 6,000children were admitted to ACF International Network supported Nutrition Rehabilitation Units (NRU)with severe malnutrition.



The picture in gures:

The under 5 mortality rate is estimated to be 118 per 1,000 live birthsThe inant mortality rate is estimated to be 69 per 1,000 live births46% o children in Malawi are stunted, 22% are underweight and 5% are wasted12% o adults aged 15-49 are HIV positive. HIV prevalence is higher among women

than men (13% and 10% respectively). Prevalence peaks at 19% or adults aged 30-34. An estimated 83,000 children are living with HIV64% o children 12-23 months are ully vaccinated against six major childhood illnesses(tuberculosis, diphtheria, pertussis, tetanus, polio and measles)

With the long-term problem o acute malnutrition in Malawi, there is an established national systemo NRU attached to paediatric wards and local hospitals throughout the country to treat severe acutemalnutrition. The MOH has adopted the World Health Organisation (WHO) guidelines or the treatmento moderate and severe malnutrition in children and in 2002 the ACF International Network starteda capacity building programme or the training and supervision o 48 NRU in these guidelines.Children with moderate and severe malnutrition are treated in NRU and through supplementary

eeding programmes (SFP) according to these guidelines. In addition to this, the MOH has recentlyembraced Community Therapeutic Care (CTC). This approach brings the treatment o children withsevere malnutrition to the community level and in doing so, dramatically increases accessibility tocare. Within the model o CTC, there are stabilisation centres (SC) or the treatment o those withcomplicated malnutrition who still require initial inpatient care. The SC still ollow the adopted nationalguidelines or the treatment o severe acute malnutrition (SAM).

Malnutrition is not uncommon in adolescents and adults in Malawi, especially in those who are inectedwith HIV and/or TB. Nevertheless, up to the end o 2005, no guidelines or programmes targetingadolescents and adults with moderate or severe malnutrition were available in Malawi.

In Malawi, HIV/AIDS has reached a crisis level since it was rst diagnosed in May 1985 posing aserious challenge to the countrys well being and national development. The overall HIV prevalence inMalawi is estimated to be 11.8% with an 18.3% antenatal prevalence contributing to approximately30,000 childhood HIV inections every year23. The HIV prevalence rate varies between the threeadministrative regions in Malawi, with 17.6% in the Southern region, 6.5% in the central region and8.1% in the Northern region24.

As already mentioned, HIV inection is increasingly associated with severe malnutrition. Studies donein the NRU at Queen Elizabeth Central Hospital in Blantyre showed an HIV prevalence o 34.4%25whilst a study conducted by the ACF International Network, MOH and the College o Medicine in

Malawi in 200526, showed 22% o NRU malnourished children to be HIV positive across 12 nationalNRU. As we will show in the section on the response to therapeutic treatment in HIV inected children,our own clinical research has shown that severely malnourished children who are HIV positive do notrespond as avourably to therapeutic eeding when compared to severely malnourished children whoare HIV negative. This will o course have an impact on the outcomes o treatment.



Programme implications for the ACF International Networ

Faced with the eects the HIV pandemic has on nutrition in Malawi, the ACF International Networkdeveloped and implemented, in close partnership with the Nutrition Unit o the MOH, a programmeto develop optimal nutritional care and support or People Living with HIV and AIDS in Malawi. Theprogramme was unded though the National Aids Commission (NAC) and intends to improve the care

or HIV-aected children and adults with regards to nutrition. The overall programme encompassedoperational research on the impact o HIV on a childs response to therapeutic treatment o severemalnutrition, assessing the impact o stigma, implementation o HIV counseling and testing, andcommunity based approaches or education and screening.



HIV: a convenient shield for poor

standards of care?



HIV: A CONVENIENT SHIELD FOR POORSTANDARDS OF CARE

I

n 2002 when the ACF International Network arrived in Malawi to respond to the Southern Aricanood crisis, it was noted that there were an unusually high proportion o deaths amongst the childrenbeing admitted or severe acute malnutrition in comparison to the severity o the crisis. Initially it was

elt that this may be related to the new approach taken by the ACF International Network o capacitybuilding government structures to treat severe malnutrition rather than bringing in specially trained stato run the therapeutic eeding units. Government sta were seriously overworked and resources werelow with overcrowding a common occurrence in the nutrition units. At this time Malawi was sueringthe consequences o the brain drain as many qualied medical sta let the country or greenerpastures and promises o more pay overseas. Indeed, with 25% o the global burden o disease, Aricanow has approximately only 1-3% o the worlds total number o health workers27.

Large numbers o children with complicated malnutrition were being admitted to therapeutic eedingcentres and a dierent pattern o recovery was noted to that usually seen in ACF International Networks

therapeutic eeding centres used or the treatment o severe malnutrition. Cure rates were ailing to meetthe expected international standards including the benchmark o less than 10% mortality28, childrenwere taking longer to recover and mortality was occurring at unexpected stages o treatment. Oncedischarged, the same children and their siblings were returning with repeated episodes o malnutritionsuggesting a reduced household capacity to meet amilial nutrition requirements.

Initially, when the ACF International Network sta raised the concern o HIV aecting cure rates - aconcern which was o no surprise to Malawian health workers - donor response was to imply that HIVmay be a convenient shield or poor standards o care. It was thereore decided to collect countrywidedata to gain valuable supporting evidence on HIV inection patterns in severely malnourished childrenand to guide the development o integrated nutrition and HIV care in a resource-limited setting. The aim

was to quantiy the extent and geographical distribution o childhood HIV inection in a representativerange o NRU in Malawi. It also enabled the ACF International Network to assess the acceptability oHIV testing to carers o severely malnourished children in both urban and rural settings

Collecting the evidence and establishing the impact

Data was collected in twelve NRU across the country, representative o each region, and withineach region, representative o rural and urban centres. A team o ourteen nurses received specialisttraining on HIV counseling and testing and were responsible or collecting the data. This skill andknowledge capacity building was planned as a long-term benet to study sta or use in their regularworkplaces.

All children and their carers admitted to each o the twelve NRU over a two-week period in the dryseason and a two-week period in the rainy season were oered HIV counseling and testing. Childrenunder 15 months were excluded, to avoid diculties with interpretation o alse positive rapid testresults, as more sophisticated tests were not available at this time. The two separate periods o testingwere conducted due to the hypotheses that there would be a higher concentration o HIV-inectedchildren with complicated malnutrition in the dry season than in the rainy season, when uncomplicatedseasonal malnutrition related to ood shortages would be prominent.

When a child was ound to be HIV positive, the carer was counseled, and reerrals or ongoing care

were made. This included reerrals to treatment centres providing ART and opportunistic inectiontreatment; community home based care groups; prevention o mother to child transmission initiatives;voluntary counseling and testing centres; orphan care centres; and palliative care services.



Results

570 carers and their children were oered HIV counseling and testing. Acceptability and uptake washigh with 91.7% o carers consenting or their children to be tested and 70% o carers acceptingtesting or themselves. Overall HIV prevalence amongst children tested was 21.6% and there was widevariation between individual NRU. Geographical prevalence variations were signicant between the

three regions with the highest prevalence being in the south (36.9%). HIV prevalence was alsosignicantly higher in urban areas than in rural areas.

Figure 1 Geographical distribution o HIV prevalence

A child in a Southern region NRU has almost fve times the likelihood o being HIV positive than a childin a Central region NRU.

HIV prevalence is higher by a actor o 2.5 in urban areas (32.9%), than in rural areas13.2%).

Children in urban NRU are three times more likely to be HIV positive than children in rural NRU. Thisdierence is partly due to the act that the hospitals in urban settings are usually larger reerral centres,which take children who have been transerred rom other units with complications. Such reerred

patients are more likely to be the children with HIV.

As expected, NRU HIV prevalence rates were lower in the rainy/hungry season (18.4%) thanin the dry/post-harvest season (30.9%) when malnutrition would not normally be commonplace inthe population.

For those who did not consent to testing, the main reasons given included the need to consult husbandsor eeling that they were not sick and thereore did not want to be tested. Where children were positivebut the mother had reused testing, the implications o the childs results were clearly explained.



Regional and seasonal variation

The geographical prevalence patterns o HIV in the NRU, not surprisingly, refect the adult regionaland urban/rural variations recorded in the 2004 Malawi Demographic and Health Survey. However,these ndings have important practical implications.

Firstly there is a need or ecient resource utilization. Knowledge o underlying clinical inectionscontributing to SAM means that agencies can target and allocate ood supplies and medication moreaccurately. NRU with high HIV prevalence are likely to need larger ood allocations as inected childrenare likely to stay longer in the programme. Similarly they will need greater access to antiretrovirals,cotrimoxazole and medications or opportunistic inections than areas o low prevalence.

Secondly the wide variation in HIV prevalence rates is likely to explain, at least in part, the widevariation in NRU outcomes. It has been noted by the ACF International Network during support o theNRU that rural units have generally had lower mortality rates and higher cure rates than the urbanNRU29. Whilst to date this has been attributed to overcrowding and poor sta to patient ratio in theurban centres, the contribution made by coexisting HIV in SAM to high mortality and morbidity rates

cannot be overlooked. Since HIV inection directly aects all o the principal NRU outcomes (nutritionalcures; deaths; rates o weight gain)30, the background rates o HIV prevalence in children beingtreated or SAM need to be taken into account when assessing the perormance o an individual NRU.Although SPHERE standards31 or therapeutic eeding programmes previously stated that mortalityrates should not be above 10%, there has been recognition by many working in the eld that thesestandards may not be attainable in areas o high HIV prevalence, especially where there is poor accessto paediatric HIV treatment programmes (personal communication Malawi Research DisseminationMeeting Blantyre, January 2007). This will be revisited later when looking at the clinical research.

Numerically there were more HIV positive children presenting in the rainy season, but proportionately

more admitted in the dry season. As hypothesised, it can thereore be presumed that the NRU aretreating children with complications rom HIV inection throughout the year, but with a threeoldincrease in positive admissions (amongst the drastic increase in HIV negative admissions) during therainy hungry season when ood insecurity becomes the major contributory actor.



Integrating HIV counseling and testing into

nutritional care



INTEGRATING HIV COUNSELING AND TESTINGINTO NUTRITIONAL CARE

Goal

The overall aim o the Malawi programme was to mainstream HIV into the care o severely malnourishedchildren in order to improve care or children exposed or inected with HIV.

The initial point prevalence study demonstrated a high rate o uptake o HIV testing: >90% by carersor children with severe acute malnutrition, ollowing counseling by specially trained nurses. The uptakerate by carers or personal testing, at >70%, was also higher than anticipated. Both ndings counterearlier perceptions that amilies would be reluctant to participate in testing programmes. During thecourse o the point prevalence study, ART programmes or adults were beginning to roll out and wereincreasingly well established in regional centres by the second period o testing. Support services,including home-based care, nutrition supplements, PMTCT programmes and cotrimoxazole prophylaxiswere becoming more widely available, along with community awareness that case identication was

the key to programme access. It is likely that all these actors along with the opportunity to talk privatelywith trained counsellors who were not normally resident in the local community contributed to the highuptake rates.

Following the results o the study, the ACF International Network has promoted HIV counseling andtesting (HCT) and reerral to HIV care as an integral part o the NRU/SC care package, with theobjective to improve care or HIV inected malnourished children. This has been done in conjunctionwith the NAC rom 2004-2006.

Activities

To increase knowledge and awareness o HIV amongst NRU sta, training sessions were conductedon HIV-related topics to enable them to reer patients to the most appropriate acilities. The sessionscovered the basics o HIV, transmission, the link between HIV and malnutrition, and treatment andservices available such as prevention o mother to child transmission, home-based care, antiretroviraltherapy and amily planning services. The training stressed the importance o reerral to these servicesand the benets that could be provided. Sta members rom each o the 48 NRU supported by theACF International Network, attended the training. District health ocers and district AIDS coordinatorswere also invited. Reresher trainings on HIV and nutrition were conducted.

For some NRU, even where HCT services are available, actors like distance, time and nancialconstraints can delay or hinder uptake. Even where HCT is available on the same site but not in theactual unit, reerrals will be lost between people agreeing to be tested and actually attending ortesting. Thereore, the ACF International Network acilitated ull HCT training or sta members oselected NRU where access to testing was more limited, to develop their capacity to implement HCT inthe NRU. Trainers o Malawi AIDS Care and Resource Organisation (MACRO) acilitated this trainingwhich, in accordance with MOH regulations, lasted 4-5 weeks. Some o the sta identied or trainingdid not reach the level o education required by the MOH to be ull counsellors and these participantswere trained as HCT motivators.

Although several NRU now have sta members qualied to perorm HCT, this has not resulted in HCTtaking place within all NRU. This is due to several actors, including lack o provision o test kits and

increasing availability o HCT services within the healthcare acility (external to the NRU). Althoughthe trained counsellors do not actually perorm HIV testing in these NRU, they still play a valuable role,acting as motivators or HIV testing.



Uptae evaluation

Between September 2005 and February 2007 48 NRU and SC were evaluated to examine the uptakeo counseling and testing as an integrated part o nutrition care.The overall uptake o HCT amongst children admitted or inpatient care o SAM increased rom around

30% to around 50% between 2005 and 2007, with considerable variations between NRU/SC. Thosewith specialised sta members trained in HCT, had the best uptake, oering and providing the serviceon admission. In those centres with a low uptake, HTC was not always easily available, or examplewhen only oered by busy medical sta or in centres with particular sta shortage.

In many NRU/SC human resources are limited and more oten than not, home crat workers (HCW),health surveillance assistants (HSA) and nurses have the most patient contact. Widening the range ohealth proessionals able to initiate the oer o HCT is thereore important; this was previously elt tobe a role or a clinical ocer or medical doctor. Today in the NRU/SC, a higher number o nurses,HSAs, and HCWs are initiating the oer o HCT in comparison to 2004. This is shown in gure 2.

Figure 2 Sta initiating HCT in NRU and SCs 2004 & 2006

Copyright ACF

The national HIV policy in Malawi aims at routine testing or all patients rom high risk groups includingmalnourished children. Nevertheless, rates o HIV testing o the children admitted to NRU remainbelow 50%. Results o a ollow up evaluation done by the ACF International Network in August 2006show that HCT is routinely done in only 28 out o 48 NRU. This is encouraging, but there is still alarge proportion o NRU where reerral is done on the basis o the clinical condition or doctors/carers suspicions o HIV inection rather than as routine procedure. When we look at social researchconducted to look at stigma and perceptions o care, it will be apparent why this is not appropriateand in act adds to the continuing challenge o HIV-related stigma. Many sta said they would likemore training on HCT, perhaps refecting that sta members are still uncomortable with reerral orHCT and the skills required to discuss and oer testing. In general, there is also a high turnover osta in the NRU, itsel a possible consequence o the population impact o HIV. Ongoing training andsupport is thereore needed.

NRU/SC nurse Clinical officer/medicaldoctor

Health surveillanceassistant

Home craft worker Other

NumberofNRU/SC

whereth

isgradeofstaffinitiatestheHCTprocess

0

5

10

15

20

25

30

35

40

Number of NRU/SC 2006Number of NRU/SC 2004



Service implications

HCT services are becoming more available and accessible to children admitted to NRU. In the nearuture, the increasing availability o ART or children, and access to inant HIV testing methods arelikely to ampliy this trend.

As HIV treatment services or children develop, routine access to HCT in all NRU, with adequate supplieso test materials and well-trained sta, would ensure that children receive timely and appropriateclinical interventions. There should be a strong move in international guidelines towards promotiono routine paediatric HIV testing, including that o inants, where it can result in access to eectiveHIV services. In each context, guidelines need to be adapted locally to address the complex socialand holistic needs o aected children and their amilies with the provision o integrated clinical careprogrammes linking therapeutic eeding and community based therapeutic care programmes with HIVtreatment programmes.



Response to therapeutic treatment in

HIV-infected children



RESPONSE TO THERAPEUTIC TREATMENT INHIV-INFECTED CHILDREN

T

here are a total o 92 Ministry o Health and CHAM (Christian Health Association o Malawi) NRUacross Malawi, 70 o which are currently being supported by non governmental organisations(NGOs) in the implementation o the national protocols or the treatment o severe malnutrition;

48 o these are supported by the ACF International Network.

At the time the ACF International Network started supporting the NRU, the standard Malawi Nationalprotocols in place were adapted rom the WHO guidelines which are inpatient based and use F75and F100 therapeutic milk. These protocols are under review and the new national guidelines willhave a community and outpatient ocus, ollowing a CTC (Community Therapeutic Care) model32.

The current WHO treatment protocols or severe acute malnourished children have not been assessed onappropriateness or HIV positive children. In response to this gap in knowledge, the ACF InternationalNetwork proposed clinical research, to address the question whether nutritional rehabilitation protocols

need to be adapted or HIV inected children. The research looks at the response o malnourished HIVinected children to nutritional rehabilitation and the causes o mortality. The main research questionasked was:

To what extent does HIV/AIDS affect a severely malnourished childs response to nutrition therapy?

This issue was addressed through a cohort study. As already highlighted, many children do not gettested or HIV during admission in the NRU. One o the things thought to play a role in reusal o HCTis existing stigma around HIV. To be able to better address this problem, it was designed, as part othe research, to include a cross sectional study looking at the stigma around HIV in the context o theNRU to assess the subsidiary research question:

How does HIV/AIDS aect the reported attitudes and behaviours o sta towards childrenand their carers in the NRU?

Stud design

Many children do not get tested or HIV during admission in the NRU. One o the things thought toplay a role in reusal o HCT is existing stigma around HIV. To be able to better address this problem,it was designed, as part o the research, to include a study looking at the stigma around HIV in thecontext o the NRU.

The recruitment o a cohort o children started in May 2005 in three NRU in the central region o

Malawi: Kamuzu Central Hospital, Mitundu Community Hospital and St Gabriels Hospital.

Out o 507 children recruited to the study, data rom 454 children was analysed. Baseline characteristicscollected included age, sex, HIV status and CD4%, haemoglobin level, presence o oedema, malariastatus, maternal health actors and location o residence.

Inclusion criteria:

Admitted to NRU with



Results

HIV inected severely malnourished children in Malawian NRU were 3.4 times more likely todie than comparable uninected children.

O the 454 children, HIV prevalence was 17.4% and there was 14.8% mortality overall. 35.4% o

the HIV inected children died, compared with 10.4% o the HIV uninected children; this gap wasstatistically signicant. HIV inected children were also signicantly more likely to have low haemoglobinand to live in an urban household. They were less likely to be oedematous or to have malaria.

Mortality in the HIV negative children varied by NRU, and was less than 10% in two NRU complyingwith acceptable international standards33. Mortality among the HIV inected children was considerablyhigher than acceptable international standards in all three NRU, ranging rom 20-38.5%. Youngerchildren were more likely to die, with those aged between 6-12 months having the highest prevalenceo mortality, as shown in gure 3.

Figure 3 Mortality among HIV positive children enrolled in NRU

Copyright ACF

HIV inected children were not more likely than HIV uninected children to die within the rst 48 hoursor at home during the our month ollow-up period ater nutritional recovery and discharge. More than50% o deaths within the hospital occurred by day 10. O the 83.6% (56/67) mortality that occurredin hospital, 75% o them had been transerred rom the NRU to the paediatric ward. 16.4% o deathsoccurred at home during the ollow up period ater discharge rom nutrition rehabilitation. Figure 4gives a summary o all mortality.



Figure 4 HIV prevalence and mortality by site

NRUHIV

prevalence

Mortality in

hospital HIV

uninected

Mortality in

hospital

HIV inected

Mortality

in hospital

overall

Mortality

during home

ollow-up

Mortality

overall

(including

ollow-up)

KCH 36.3%(61/168)

6.5%(7/107)

29.5%(18/61)

14.8%(25/168)

1.8%(3/168)

16.7%(28/168)

Mitundu4.5%

(5/110)

2.9%

(3/105)

20%

(1/5)

3.6%

(4/110)

3.6%

(4/110)

7.3%

(8/110)

St Gabriels7.4%

(13/176)

13.5%

(22/163)

38.5%

(5/13)

15.3%

(27/176)

2.3%

(4/176)

17.6%

(31/176)

Total17.4%

(79/454)

8.5%

(32/375)

30.4%

(24/79)

12.3%

(56/454)

2.4%

(11/454)

14.8%

(67/454)

Copyright ACF

Levels of immune status

CD4% results were available or 374 children. 53.8% (35/65) o HIV inected children had a CD4%o less than 15%, as compared to only 0.97% (3/309) in HIV uninected children. 85.7% o deaths inHIV inected children occurred in children with CD4 below 20%.

Figure 5 Mortality by CD4%

Copyright ACF

HIV inected children with a CD4% below 20% were signicantly more likely to die than HIVinected children with CD4% above 20%.

40% (18/45) o HIV inected children with a CD4% under 20 died, in contrast to 15% (3/20)o HIV inected children with a CD4% over 20.

Using the 2006 WHO recommendations or paediatric ART by CD4%34, 69.2% (45/65) othe HIV inected children in our study with SAM required ART. None o these children werereceiving ART upon admission to the NRU. One third o the children requiring ART died whilestill in the NRU.



Discussion

This study shows clearly that mortality was markedly increased in HIV inected children compared withHIV uninected children, and this occurred despite 24 hour medical and nutritional care. Internationallyaccepted minimum standards or treatment o SAM state that mortality should be within 10% in atherapeutic eeding programme35. While the overall mortality o 12.3% (within the hospital) or 14.8%

(including ollow-up) does not meet this standard, it is valuable to urther break down the cohort byacility and HIV status. Both KCH and St. Gabriels hospitals are reerral hospitals that receive transerso complicated cases rom across the region. At KCH, over one third o the children with SAM wereHIV inected. The mortality among HIV uninected children is within SPHERE minimum standards at8.5% demonstrating acceptable quality o care, but the overall mortality at the centre is elevated abovethis benchmark by the high rates o mortality in complicated malnutrition amongst the HIV inectedchildren. The high incidence o mortality among the HIV inected children in this cohort cannot beexplained by poor quality o nutritional care but rather indicates the high rate o medical complicationsin the HIV inected children. Indeed, this rate o mortality in the HIV inected children suggests thatminimum standards, devised or the emergency context, need to be revised or use with children withcomplicated SAM in the context o HIV.

One o the limitations o the study is that HIV results were not known or 13% (67/507) o the patients,either because they died beore having an HIV test, or because their blood sample was clotted or theirresult missing rom the lab. Data rom some o the most vulnerable children will thereore have beenlost during this early period. As there was one-third mortality in this group, more than double that othe hospital mortality within children recruited to the study, it is also probable that a higher proportiono these children were HIV-inected.

While 75% o hospital deaths occurred on the paediatric ward, this is not an indictment o quality ocare on the wards, but rather a demonstration o the complications seen by hospitals in HIV related

SAM. We were not able to assess precise cause o death in these children, but this nding highlightsthe need or continuity o nutrition therapy and medical care though collaboration between medicalpaediatric care and nutrition rehabilitation programmes where the two systems are separate.

CD4% criteria or commencing ART in children with SAM need to be urgently examined and clearlydened. More than hal o all HIV inected children with SAM had a CD4% below 15%, and lowCD4% was a high risk actor or mortality. While the majority o deaths occurred in children with aCD4%



Lessons for communit based management

Over 50% o mortality occurred within the rst 10 days ater hospital admission. This highlights thecomplexity o the medical management o complicated malnutrition and emphasises the standards ocare and optimal medical treatment that have been striven or over the last decades40. It is essentialthat this is not orgotten in the public heath approach o the community-based model and that the

correct management o clinical care is still given the importance and training that is warranted orthe stabilisation centres. Another point to note is the similarity in the incidence o mortality betweenthe HIV inected and uninected in the early stages o treatment when complications still preside, andthen again ater recovery during ollow up. Overall, the HIV inected children had a three times higherrisk o dying. I the risk was not higher in the early stages, and similar ater nutritional recovery, itsuggests that the higher risk lies in the treatment phase, ater stabilisation and beore recovery. Severalpossible explanations could be proposed: inappropriate management o HIV related complications inthe stabilisation phase; risk o hospital acquired inections in children with poor immunity; and nally,it perhaps questions the suitability o milk-based protocols on a chronically HIV-aected gut. Furtheranalysis on morbidity will be needed to answer such questions. However, comparisons with HIVinected children in community-based models would certainly be valuable.

37.7% o HIV inected children requiring ART within this study died beore achieving nutritionalrecovery and thereore beore the chance to start ART post HIV diagnosis. This emphasises the urgentneed or HIV screening services to be more widely accessible to all potentially exposed children.PMTCT programmes, which are scaling up in Malawi, provide an ideal opportunity or this. HIVexposed children should be ollowed up, and tested or HIV through specialised inant tests or antibodytesting. Timely and adequate care and treatment can then be oered to those children ound to beHIV inected, which can prevent development o irreversible damage to their health and development.Also, in those children with signs o malnutrition and altering growth, detection and treatment o HIVshould be a priority, the earlier the better. This must involve all health care workers who see children,

and the integration o HIV detection and care into the Malawi IMCI guidelines is a good step towardsthis. Waiting until children develop SAM puts them at unnecessary high risk o mortality. We urgentlyrecommend that all inpatient and community based programmes or the treatment o both moderateand severe malnutrition in high HIV prevalence areas include testing and counseling or HIV.



HIV/AIDS, malnutrition, stigma and discrimination



HIV/AIDS, MALNUTRITION, STIGMA AND DISCRIMINATION

This chapter is a summary o a study done in collaboration with REACH Trust Malawi

Background

In a pilot study conducted by the Panos Institute in Zambia, care providers claimed they oundpatients with HIV/AIDS more dicult because o their multiple inections; their hysteria,their attention seeking, and their many thoughts41 (i.e. the need or psychological aswell as medical support). They also admitted that HIV/AIDS patients were oten not giventhe same services because doctors knew they are going to die and, thereore spent lesstime on them. Stigma was also evident in mothers taking care o their children with HIV inhospitals. They tended to abscond rom treatment because they believed that their childwas going to die and their ew resources should be used on those who would live.

As a part o the clinical research carried out in the nutrition rehabilitation units, an observationalstudy was conducted to explore the impact o stigma on the quality o care or HIV inected anduninected severely malnourished children. Like many PLWHA in resource poor contexts, HIV positivechildren are vulnerable to stigmatisation and discrimination. This stigma and discrimination can beexperienced both in hospitals and in the communities in which they live. HIV/AIDSrelated stigmaseriously impedes eective care and support programmes. Stigma towards the aected amily orindividual oten poses one o the greatest challenges or those living with HIV/AIDS and one that isextremely hard to address.

It is against this background that the study aimed to explore how stigma and discrimination on thebasis o perceived HIV status aects the interactions between health sta, carers and children inthe nutrition rehabilitation units in Lilongwe. The study elicited important inormation with regards to

health workers attitudes towards HIV positive malnourished children and their carers. Such attitudescan negatively aect the treatment and eeding outcomes o malnourished children and the caringexperiences o their carers.

The study, conducted between November 2005 and March 2006, looked at the dimension oexperiences and relationships in the NRU to help shed light on dierences in response to therapeuticeeding amongst severely malnourished children who are either HIV positive or HIV negative. Globalliterature suggests that health providers may discriminate against or act dierently with PLWHA in thehealth care setting, but ew o these studies to date specically ocus on children42.

Objectives o the Study

To document the challenges carers and health workers ace in supporting malnourished1.children in the NRU setting.To explore how the health workers and caregivers perceive the childrens HIV status.2.To assess the extent o perceived and enacted stigma by health workers and carers and3.explore how this relates to perceived HIV status.4. To explore whether gender, age, cultural norms and work experience shape stas and carersperceptions and behaviour towards malnourished children perceived as HIV positive.5. To investigate hospital stas knowledge on nutrient and dietary requirements or HIVpositive and negative malnourished children.

To make recommendations to hospital personnel and other stakeholders in order to6. reduce stigma in NRU and provide in-depth contextual inormation to help interpret theobservation trial.



The study ocused on exploring and understanding the in-depth context o the behavioural attitudesthat aect the response o malnourished children to therapeutic eeding, alongside the clinical issues.This is critical in order to enable positive outcomes or children who are both malnourished and HIVpositive. It was conducted on two sites: Kamuzu Central Hospital (KCH) and St. Gabriels Hospital inLilongwe district. The respondents included sta involved in care o the malnourished children and thechildrens primary carers who resided with them during treatment. The study was conducted during the

assessment and treatment or severe malnutrition. Sta included nurses, ward attendants, home cratworkers and doctors. In addition to selection o sta o dierent cadres, we purposively selected stato include sta o dierent demographic groups such as age, sex and length o working experience atthe study site in order to explore whether gender, age, cultural norms and working experience shapestas perceptions and behaviours towards malnourished children who are HIV positive. Carers werealso sampled to capture dierences by age, whether the carer was a biological parent or anotherrelative, and duration o stay in the hospital. The study used three complementary qualitative researchmethods: in-depth interviews, participant observation and ocus group discussions. Many aspects othe ndings highlight general challenges aced in the NRU by both carers and sta. This chapter willsummarise the main ndings o the study related specically to HIV. The ull report is available onrequest.

Findings

A complex interplay o ndings emerged on the actors that contribute to the response o therapeuticeeding by the children in the NRU. These ranged rom dierent challenges carers and health workersace, understanding o HIV/AIDS and malnutrition among the carers, knowledge o HIV status amongsthealth workers and carers, the extent o perceived and enacted stigma, and health workers knowledgeon nutrient and dietary requirements or HIV positive and negative malnourished children. The mainthemes that came out were The milk is not enough reerring to resources available in the NRU suchas milk, medicine, space, hygiene; We have dierent blood and My other children back home

reerring to the carers multiple responsibilities and challenges.

Gender aspects

Over 90% o the children in the NRU were accompanied by their mothers. Fathers are mostly uninvolvedwith the childrens care in the NRU. This oten puts the mother in the position o making care, testing andtreatment decisions without their husbands participation or consent. These types o amily decisionsare usually made by men in Malawian society. A woman returning home to inorm her husband oHIV inection may be vulnerable. The lack o participation o athers in the nutrition programme alsomeans that the NRU is not acting as an entry point or HIV services or men who may be in need oHIV testing, education and treatment.

my husband doesnt know about this. I I stay here I will ruin my marriage becausethe husband will ask where I have been or why I accepted to stay in the NRU without hisconsent

Challenges: the mil is not enough

The theme o inadequate resources came out continuously and whilst this to a certain extent is thecase throughout health structures in under resourced countries, it is sometimes elt that in particular, theresources dedicated to the treatment o malnutrition refect the socio-economic status o those usuallyaected. Both carers and sta mentioned the lack o resources available and how this impacted oncare. This included shortages o milk and medicine or the children, as well as lack o ood, soap andblankets or the carers. Many o the carers travelled long distances to the NRU, and came withoutadequate ood, money and supplies or their stay; leaving some o the carers hungry with a lack o



acilities and supplies or personal sanitation. Research sta observing in the wards reported thatcarers and children were oten sleeping on the foor due to overcrowding. Not all carers and childrenhad blankets or sleeping, although the ward was sometimes cold at night, and the guidelines ornutrition rehabilitation o severely malnourished children state that children must be kept warm toprevent hypothermia43. Although the NRU has sinks with running water or the carers use, soap isoten not available. Children are playing and sleeping close to one another in unsanitary conditions,

risking cross-inection. The researchers noted there were sometimes over 50 children on the ward withjust one or two nurses on duty.

For the carers, it can make them question the suitability o coming or care. The health sta themselvesmention understang, lack o training, lack o space, shortage o equipment, lack o coordinationamongst themselves, and lacking understanding or being less cooperative as the challenges they aceon their day to day operations mount. It is perhaps then, not so surprising that carers eel the stress anddemotivation o the sta. Carers also reported that the care provided within the NRU was not holistic;that they had to move up and downwards to gain care or themselves and their children.

In act it pains because as my colleagues have pointed out we are made to wait or the

doctor or almost the whole day. When you go there, they say I am busy so you have towait. When you go there next time, you are told the same thing. So as a person who isalso in confnement together with the child you really eel like going home is the best youcan do because even i you stay here there is nothing that is happening. (Focus GroupDiscussions with women, KCH)

Many carers reported ill treatment by sta whilst others see it as negligence and underperormanceby some health workers:

we fnd most o them just sitting on a chair and claim they are busy and just two days

ago a certain nurse literally shouted saying, I am ed up with pinching your childrenseet. (Focus group discussion with women, KCH)

Carers complained about lack o support in terms o material and nancial resources and this is a bigchallenge or them to cope both beore and during their time in the NRU. Some have done what theycan to prevent malnutrition but resources are just too limited. Once their children are admitted withmalnutrition there is always the eeling that they are somehow to blame.

Then I went to a clinic with her where I was told to buy maize, beans, groundnuts toprepare porridge or her three times a day. The doctor assured me that she will be OK.However, because o fnancial constraints and the hunger crisis which was roaming then,

I could not manage. (In-depth interview with male carer, St. Gabriel)

The carers were also seen to become psychologically aected by the way the health workers treatthem. Health workers engage in practices that can demean or discourage the carers rom adhering totreatment o their children. For instance they are reported to shout at the carers, abusing and mockingthem when they are in the NRU. This was ound through the study to greatly contribute to cases oabsconding by the carers as they eel they cannot continue staying at a place where they are beingdisregarded or ill-treated. Through reports rom observation, group education sessions appear to bequite hierarchical. Generally the health care worker stands at the ront o the carers, who are sittingon the ground. The carers are oten then asked to sing, clap and repeat back what the health careworker has said. While this may be a time-ecient and culturally amiliar method o education, it isnot patient-centred care and does not allow or an exchange o ideas.



The impact of stigma: We have different blood

The perceived or enacted stigma by health workers and carers relating to perceived HIV status othe children was reported in two strong themes rom carers: We have dierent blood reerring tosta attitudes and underperormance, and What wrong did I do to God? reerring to stigma andmalnutrition.

Dierences between the sta and the carers are evident rom the reports rom researcher observation.Most hospital sta have higher socio economic status than the carers. This is evidenced by dierences indress, appearance and possessions; or example sta tend to be educated, have mobile phones, wearhair weaves and shoes, while carers have less education, wear chitenjes (abric wrapped skirt) andare bareoot. The relationship in the NRU between carers and sta appears to be hierarchical. Carersoten come and bow beore nursing sta, or avert their eyes downward when they are requestingcare.

Carers report that some o the sta are warm and welcoming with them, but that others are unkind.Illustrative quotes include:

Some are good while others are harsh. Some they do their work as nurses, very riendlyand humble while others instead o helping you they say bad things to you.

You can not interact with all o them nicely, some are good but others, we have dierentblood.

Some o the carers reported being made to eel stupid in their interactions with sta:

Because i the doctors are not considerate we eel underrated as i we are just stupid to

be here, as i we asked God to be in the hospital.

There are some nurses who do not treat us with dignity. However there are others whotreat us as human beings. (Indepth interview with emale carer, St. Gabriels).

This disparity is echoed in the interviews with sta. One ward attendant said:

so we cant be the same because o our dierent backgrounds and upbringing. On thepart o carers, I would say a carer is a carer, we cant be the same.

Sta expressed some rustration at lack o understanding and compliance in carers:

As a health worker I can say that the relationship with carers is always good. As long asthey agree and do whatever we tell them to do, we stay together without any problem.

One sta member likened the relationship between sta and carers to the relationship between parentand child. Some o the language used by sta when reerring to the carers seems to indicate a lackrespect or the carers situation. Carers are said to complain about trivial matters, to oer lameexcuses, to be cunning, to lie, and to ignore responsibility.

When asked, all sta members reported that they do not treat HIV inected and uninected childrendierently:

Actually there is no dierence because all o them are our patients to seek care, and wetreat them all as our patients. We dont treat them dierently.



Love is the undamental tool or health workers in order to comort them and make themorget their worries.

Other statements however, reveal some dierences in sta attitudes towards mothers o HIV inectedand uninected children:

The dierence in relationship is that as I have already said carers whose children are HIVpositive become stubborn and cunning due to lack o hope.

carers whose children are HIV negative are not that difcult to handle. They arealways understanding and ast learners willing to implement whatever they are being toldto practice, unlike their riends.

What did I do wrong?

There were dierent perceptions between the carers and health workers towards how each group

regards the other when it comes to reaction upon knowledge o childrens HIV status. Some healthworkers perceive carers as people who become troublesome and non-compliant when they know thattheir children are HIV positive. They tend to lose condence and hope in the therapeutic eeding andmay abscond rom treatment.

Carers associate their childrens illnesses with spirituality and divine punishment and report experiencingstigma in their interaction with other carers. One carer said:

Ah I dont know because I just say it is the making o Satan why others are OK like histwin brother is OK walking and good health and they are saying this one is malnourished.

So I just say it is the work o the Satan.

Some carers seemed to accept their illness and want to live positively while other participantsrevealed a sense o hopelessness about HIV. This theme o hopelessness was also explored in theinterviews with sta members. One nurse told a story o a grandather who reused treatment or hisgrandchild.

He vehemently shouted at us, saying: whats the use o drugs even i he dies I thoughtthis disease once you catch it you never recover, the end is death. The grandather let thehospital with the child, however the ather later brought the child back or treatment.

Carers maniested their disturbance upon hearing their HIV status, oten becoming overwhelmed,concerned, earul and desperate upon learning that they are HIV positive. These reactions may beattributed to the common concept that HIV is incurable and means a death sentence or most people.Carers need to be counseled about the availability o ART both or themselves and or their children.Not knowing about how to break the news o their HIV status to husbands has been another majorcause o anxiety amongst carers. It is thereore important that the issue o disclosing to the spouse ishighlighted during counseling sessions, and that the health systems should be fexible enough to allowthe carers to reer their husbands to counseling.

Some o the positive responses captured on the part o carers were that some husbands support andencourage their wives to go or HCT. Those who receive support go to the extent o telling their ellowcarers and health workers about their HIV status and counseling each other. This is encouraging andis an important step to ghting stigma and providing psychosocial support to people living with HIV/AIDS. However, there remains a need to encourage carers to be more open and to accept positive



living ater being diagnosed HIV positive.

The issue o stigmatization and discrimination came not only rom the health workers but also thecommunities where the carers live. The study shows that due to ignorance or misinormation, somerelatives o the amilies whose children are in the NRU, spread news in the villages that the carers andtheir children have AIDS. As a result, carers are mocked and eel rejected by their relatives when they

come to visit them and eel that they are being rejected on the grounds o being HIV positive.

Denial or multiple responsibilities? M other children at home

Some carers also stigmatize and discriminate against their own children. Inormation elicited rom thehealth workers indicated that once the carers know that their children are HIV positive, they abscondrom treatment saying they cannot go on caring or a child who will inevitably die despite being inthe NRU. They still think that once a child is HIV positive s/he can never be cured o other diseases,even malnutrition. According to health workers once a carer knows a child is inected with HIV/AIDSthe immediate thing that comes to their minds is death. Then they categorise all that are critically illas those with HIV/AIDS. The consequent denial o access to treatment or children by some carers

is a true indicator o how discrimination towards people perceived to be HIV positive takes root in asociety and is illustrative o the dilemmas and challenges aced by the mothers/carers o HIV positivechildren.

carers whose children are HIV positive become wildthey are always reluctant toaccept or eed the child(In-depth interview with an auxiliary nurse, KCH)

There were contradictory responses rom the two sets o respondents that researchers interviewed.From the health workers perspective carers are likely to abscond when they know their children are

HIV positive. The carers themselves cited things like the need to take care o other children at home,and arming, as the reasons that orce them to abscond rom treatment rather than the HIV status otheir children.

How health worers and carers perceive HIV

Some actors were observed that shape health workers and carers perceptions and behaviourstowards malnourished children perceived as HIV positive. In this particular study, discrimination wasobserved through tactics applied by the nurses when carrying out their duties. They were observedto be touching some children but not touching those they perceive to be HIV positive. Equally, theyseemed to have no interest at all in those children who seemed to be both severely malnourished and

HIV positive. This was observed during assessments on admitted children or receiving new patients.Children that were not touched by nurses were those who looked to be severely malnourished. Onenurse wondered why a mother had to come back to the NRU with a child who she said was HIVpositive. This signies stigmatisation in some relationships within the health care setting to childrenperceived to be HIV positive.

Others, however, correctly expressed concern that children were arriving in the NRU with alreadyadvanced malnutrition, and that the best opportunity to intervene and prevent mortality has passed:

The moment they come to NRU its already too late. They should have had ood at theirhome, they should have started ARVs earlier, they should have been detected to have TBearlier, so you are always lagging behind, and or some children its too late.



Understanding of HIV/AIDS and malnutrition among carers

Most o the respondents interviewed showed that they have little knowledge about issues o HIV/AIDSand malnutrition. This might be due to carers low levels o education combined with lack o properorientation by the health workers to the carers upon admission in the NRU. Carers were not properlytold why they should be giving children milk only and not other oods when they are in the NRU; the

health workers just tell the carers about it as a regulation they need to ollow and not necessarily takingtime to explain to them why they need to adhere to it.

However, some respondents showed that, to some extent, they do know something about HIV/AIDS,as well as the relationship existing between malnutrition and other chronic illnesses, as they were ableto cite inormation such as modes o HIV transmission and the link between malnutrition and chronicillnesses. There remain however, many misconceptions as regards to how they can identiy a personwho is HIV positive.

On AIDS a person is known to have the disease ater giving birth because she suersrom malaria quite oten and develops cough that is persistent. She also complains o

pneumonia always whether the weather is hot or cold.(In-depth interview with a carer, KCH)

We can know that someone is HIV positive through the appearance o the hair. No matterhow old a person can be, but with this disease the hair looks curlish and with stuntedgrowth like that o a newly born baby or an inected cat.(In-depth interview with emale carer St. Gabriels)

Some respondents equated HIV/AIDS to TB thus regarding any TB patient as HIV positive and vice-versa. In the community, malnutrition is oten viewed the same way. Some carers and sta know or

think they know the HIV status o the children and/ or carers in various ways. Many just suspect orguess, and this can be the basis or the start o stigmatisation.

Conclusions

While it was clear that HIV stigma is present in the NRU, some o the most important ndings comingout o the stigma study was that it was access to and quality and availability o HIV services integratedinto nutrition care that made the biggest dierence in terms o service uptake. Stigma was not the mostimportant reasons or caretakers not to go or VCT. In act, many carers are very willing to go or anHIV test provided they understand its importance and access to it is practical. HIV stigma needs to beconsidered in the design o services within the NRU, and education and counseling should be made

available or sta and carers. The central recommendation rom the stigma study is that HIV testingand treatment services should be better integrated into severe malnutrition. This should be done in aholistic way; addressing the issues o stigma through improving quality o care, and providing statraining on promoting positive living with HIV. Maternal and amily care needs to be incorporated. AnHIV integration study is planned to ollow on rom the stigma study looking at how HIV and nutritionservices are integrated, how they are perceived and used, and their impact.



Life after nutrition rehabilitation:

follow-up of children discharged



LIFE AFTER NUTRITION REHABILITATION:FOLLOW-UP OF CHILDREN DISCHARGED

A

ll children identied as HIV positive during the research were reerred into services to bemonitored or HIV progression and assessed or suitability to start anti-retroviral therapy (ART),medication which helps slow the replication o the HIV virus and the damage it consequently

causes to the immune system.

Due to unding diculties it was not possible to continue with long term ollow up o the childrenrom the research study as planned. Most children were ollowed or approximately our months onaverage. In 2007 as a part o the Hunger Watch series on HIV/AIDS it was decided to revisit someo the households o the children and carers involved in the research to see how they were managinghaving received their HIV diagnosis and appropriate reerral. Previously in the nutrition units it hadbeen noted that the same children and their siblings were returning with repeated episodes o severemalnutrition indicating an inability to cope at household level. The aim was to see how the positivehouseholds were aring in comparison to the HIV negative households, to look at the impact that HIV

has on a household ater diagnosis and linkage into reerral services. Thirty eight households rom theLilongwe area were visited individually to see their current nutrition status and the ood security o thehousehold. Questions were also asked about what services each amily were using with regards tonutrition and HIV care. Fiteen o the households had an HIV positive status, while 23 had no memberknown to be inected with HIV.

Nutrition status

Children were checked or weight, height, and mid-upper arm circumerence (MUAC). Family membersalso received MUAC screening. When measurements were taken, the average time since dischargerom nutrition therapy and diagnosis was 13 months. In this time none o the children had relapsed,

although one HIV negative child had died o causes unrelated to malnutrition or HIV.O the children who were diagnosed with HIV whilst receiving therapeutic eeding, 85% o them arenow receiving ART. None o these children showed even moderate signs o acute malnutrition andall reported less illness since discharge. Stunting, a recognised sign o chronic malnutrition, remainsprominent, and is more pronounced in the HIV inected group, though on a downward trend in boththe negative and positive children. There is an extremely high proportion o stunting in Malawi, linkedto long term ood insecurity.

Figure 6 Stunting data 13 months post-discharge o HIV- and HIV+ children

Copyright ACF



The act that the children were all doing so well may be largely due to the response to ART. ART willhelp the immune system to recover, leaving less room or inections that cause acute loss o weight andhelp increase appetite with the general eeling o well being. It is normal that ART cannot turn aroundstunting at this stage, and that MUAC will also take longer to improve. Ater an average o 13 monthssince discharge, it is a promising step that the children have maintained their weight or height andare experiencing less inection that would increase their risk o malnutrition.

Famil health

According to MUAC screening, with the exception o two households, all o the positive amilies areapparently in good nutritional health. This is in line with the negative amilies who share the sameessential infuencing environmental actors; the HIV aected amilies are no worse o at this stage.

Psychosocial health however is a dierent matter, and it was clear rom the households interviewedthat there were issues o stigma and depression aecting maternal and child health. One mother wasclearly depressed; she said she would not access services even i they were there, and consequently sheputs the health o both hersel and her child at risk. Depression and isolation aects not only the adult

but also has an impact upon quality o maternal care and interaction with child practices infuencingthe childs health and development. A young mother explained how stigma and discrimination wasa problem or her child, as other mothers did not allow their children to play with her, aecting herchilds natural development through absence o interaction with other children. A grandmother told othe abrupt removal o a child rom his mother by the extended amily as they elt she was incapable ocaring or him due to her psychological health.

Maternal and child access to health care were reportedly seldom adequate as the demands on emalelabour in the household did not allow the time or long queues at health centres except or seriousillness. Whilst it was good that none o the children ell into the really sick category, this is not a

good indication or the proportion o under ves accessing primary health care and growth monitoringclinics which is where early health and nutrition problems would ideally be identied and treated.

ACF Hunger Watch Hunger HIV 11-21-07

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