PDF File - hivpolicy.org

An Evaluation of the MoH/NGOHome Care Programmefor People with HIV/AIDSin CambodiaEvaluation Team led by David WilkinsonJune 2000Evaluation Supported by

Designed and Produced by Design Group (Cambodia) designgroup@camnet.com.kh

CONTENTSipg 1pg 2Abbreviations and AcronymsAcknowledgementsExecutive Summarypg 81 Background1.1 HIV/AIDS in Cambodia1.2 Concepts of Home-Based Care for PLHA1.2.1 Comprehensive Care Across the Continuum1.2.2 Lessons learned from other home careprogrammes1.2.3 Limitations of home care programmes1.2.4 The Cambodia situation1.3 The Home Care Model in Cambodia1.3.1 Origins1.3.2 Pilot Project1.3.3 Post-pilot home care programme1.3.4 Project Reviewspg142 Evaluation design and methodology2.1 Purpose of the evaluation2.2 Objectives2.3 Design framework2.4 Evaluation Activities2.5 Data Collection2.5.1 In-depth interviews with patients and families2.5.2 Participant observation of home care visits2.5.3 In-depth interviews and focus group discussionswith community leaders2.5.4 In-depth interviews with PLHA who were notreceiving home based care2.5.5 Focus group discussions with home care teamsand volunteers2.5.6 In-depth interviews with Health Centre Managersand Hospital Physicians2.5.7 Key Informant Interviews2.6 Limitations of the evaluation

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiapg 223 Impact3.1 People Living with HIV/AIDS3.1.1 Improved QoL3.1.2 Reduced discrimination3.2 Family3.3 Community3.3.1 Linking prevention & care3.3.2 Reducing discrimination3.3.3 Community mobilisation3.4 Children3.5 Health system3.5.1 Access / Coveragepg324 Cost analysis4.1 Background4.2 Methods and Results4.3 Cost implications for households4.4 Analysis and conclusions4.4.1 Cost and time savings to households4.4.2 Programme Costs4.4.3 Urban/rural comparisons4.4.4 Cost comparisons with other programmes4.5 Limitations of cost analysispg405 Inputs and Processes5.1 The Home Care Network5.2 Team formation5.3 Training and Resources5.4 Home Care Activities5.5 The Home Care Kit5.6 Referrals5.7 Record keeping5.8 Monitoring & reporting5.9 Supervision5.10 Volunteers5.11 Support groups and other linkages5.12 Caring for the carers

CONTENTSpg 626 Battambang pilot6.1 Background6.2 Impact6.3 Community link6.4 Volunteers6.5 Access/Coveragepg667 Expansion of the Home Care Programme7.1 Key Components7.2 Expansion models7.3 Phasing the expansion7.4 Roles and responsibilities of programme partnerspg758 Summary of Key Components, Lessons Learnedand Recommendations8.1 Key components8.2 Lessons learned8.3 Recommendationspg79AppendicesI. Questionnaires Used in the Evaluationll. The Home Care Network in Phnom Penhlll. Location of Home Care Teams in Phnom PenhIV. Roles and Responsibilities of Home Care PartnersV. KHANA Technical SupportVI. List of key InformantsVII.References

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaABBREVIATIONSAND ACRONYMSAIDSALLIANCEARIARVBWAPCRCCSWDFIDDoHDOTSECFCFHIHACCHCNGHCTHIVHOPEIDAINGOKHANAKRDAMEDICAMMHDAcquired Immune DeficiencySyndromeInternational HIV/AIDSAllianceAcute Respiratory InfectionAnti-retroviralBattambang Women's AIDSProjectCambodian Red CrossCommercial Sex WorkerDepartment for InternationalDevelopmentDepartment of HealthDirectly Observed Treatments,Short CourseEuropean CommissionFrench Co-operationFamily Health InternationalHIV/AIDS Co-ordinatingCommitteeHome Care Network GroupHome Care TeamHuman ImmunodeficiencyVirusSihanouk HospitalCenter of HopeIndradevi AssociationInternational Non-GovernmentOrganisationKhmer HIV/AIDS NGOAllianceKhmer Rural DevelopmentAgencyMembership Organisation forNGOs Active in the HealthSectorMunicipal Health Department(Phnom Penh)MSFMoWVANAANACNAPNASNCHADSNGOPAOPACPASPCMPLAPLHAQSARCGSSCSTDSTITBUNAIDSUSAIDVCTVDCVHVWBWHOMedécins Sans FrontiéresMinistry of Women's &Veterans' AffairsNational AIDS AuthorityNational AIDS CommitteeNational AIDS ProgrammeNational AIDS SecretariatNational Centre for HIV/AIDS,Dermatology & STDsNon-government OrganisationProvincial AIDS OfficeProvincial AIDS CommitteeProvincial AIDS Secretariat(Home Care) ProjectCommittee MeetingParticipatory Learning &ActionPeople Living with HIV/AIDSQuaker Services AustraliaRoyal CambodianGovernmentSocial Services of CambodiaSexually Transmitted DiseaseSexually transmitted InfectionTuberculosisUnited Nations Programme onHIV/AIDSU.S Agency for InternationalDevelopmentVoluntary Counselling &TestingVillage DevelopmentCommitteeVillage Health VolunteersWorld BankWorld Health OrganisationiMoHMPAMinistry of HealthMinimum Package ofActivitiesWOMENWVWomen's Organisation forModern Economy & NursingWorld Vision

ACKNOWLEDGEMENTSThis evaluation could not have been undertakenwithout the co-operation, support andcontributions from a number of organisationsand individuals. The Evaluation Team Leadergratefully acknowledges the Evaluation Team:Samreth Sovannarith (NCHADS)Kong Bun Navy (HOPE, Cambodia)Chea Sarith (WOMEN) andPaurvi Bhatt (USAID)for their professional inputs, time and dedicationto the evaluation.The evaluation team wishes to acknowledgethe following organisations:• The International HIV/AIDS Alliance for commissioningand providing ongoing support tothe evaluation.• The National Centre for HIV/AIDS, Dermatology& STDs (NCHADS) for their input into the design,for releasing personnel for the evaluation teamand for overall support to the evaluation.• The Khmer HIV/AIDS NGO Alliance (KHANA)for providing significant personnel time, effortand logistic support.• KRDA, Battambang for logistic support.• NCHADS, WOMEN, HOPE Cambodia andUSAID for granting permission for keypersonnel to join the evaluation team.• FHI/Impact, KHANA for enabling keypersonnel to provide specific evaluation inputs.• The National Institute of Public Health (NIPH)for inputs into the evaluation design.• USAID for providing financial support forthe evaluation.The evaluation team also wishes toacknowledge the valuable contributions madeby the following people to the design andimplementation of this evaluation:Kathryn Carovano (Alliance), Lucy Carter(SSC), Philippe Girault (FHI/Impact), Ivek Navapol(NIPH), Song Ngak (FHI/Impact), Sok Phan(HOPE), Chhim Sarath (KHANA), Tilly Sellers(Alliance), Francesca Stuer (FHI/Impact), MeanChhim Vun (NCHADS), Henrietta Wells(Khana/Alliance).We are grateful to Kathryn Carovano(Alliance), Peter Godwin (NCHADS), Tilly Sellers(Alliance), Seng SutWantha (NCHADS), MeanChhi Vun (NCHADS), Henrietta Wells (Alliance)for reviewing the draft report and for providingconstructive feedback on the findings.We gratefully acknowledge the interviewteam who conducted in-depth field interviewswith patients and their families: Mony Dara, KimSaroeun, Lang Chanthol, Pan Sopheap, CheaMonkol, Khun Chantha, Son Seda, Hou Samy,Nhim Mala, Yee Kimleng. We also acknowledgethe translation and interpretation skills ofChhun Nith.Finally, we wish to express our sincerethanks to the patients, families, communityleaders, home care staff, medical personnel,programme staff and policy makers, whogenerously gave their time to answer oursometimes difficult questions with openness,enthusiasm and patience.pg 1

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaEXECUTIVE SUMMARYBackgroundCambodia is reported to have one of the fastestgrowing HIV prevalence rates in the world.Results from the latest Surveillance Survey 1indicate that approximately 170,000 Cambodiansare now infected with HIV, giving an adult HIVprevalence rate of around 3.5%.The impact of the rapid spread of theepidemic in Cambodia is drastic. During theyear 2000, an estimated 12,000 people withAIDS will seek care and support, thus increasingthe pressure on a health care system thatcurrently provides a total of 8,500 beds for allmedical conditions 2 .In 1998, as part of the response to the growingHIV/AIDS epidemic, the Cambodian Ministryof Health (MoH) established a partnership with agroup of NGOs to develop and implementCambodia's first HIV/AIDS oriented home careprogramme. The first year pilot phase wassupported by the United Kingdom'sDepartment for International Development(DFID) and the World Health Organization(WHO). Subsequently, the Khmer HIV/AIDSNGO Alliance (KHANA), together with NGOsWorld Vision and Maryknoll, have supported theMoH and its NGO partners to provide home-based care in Phnom Penh, as well as establishinga pilot home care initiative inBattambang Province.As KHANA's primary international partner,the International HIV/AIDS Alliance (the Alliance)consulted with the MoH/NCHADS 3 and commissionedthis evaluation in February 2000. Theevaluation team was led by an independentconsultant contracted by the Alliance, andincluded members from USAID, NCHADS, theNational Institute of Public Health and localNGOs. The evaluation was financed by USAIDthrough the Alliance. The purpose of the evaluationwas to assess the impact of two years ofhome care services, to provide an estimate ofthe programme costs and cost savings to PLHAand their families, and to identify the keycomponents that need to be considered inorder to successfully replicate or scale-upthis approach.The AIDS Care Unit of NCHADS is in theprocess of formulating a strategy for expandingthe home care programme to selected Provinces 4 .With the agreement of MoH/NCHADS, the findingsof this evaluation will be used to guide andshape this expansion strategy.pg 21 Report on Sentinel Surveillance in Cambodia, NCHADS/MoH, 19992 UNAIDS (2000) Country Profile, "The HIV/AIDS/STD situation and the national response in the Kingdom of Cambodia",3rd Edition - February 20003 National Centre for HIV/AIDS Dermatology and STD4 Ministry of Health/NCHADS Draft Strategic Plan for HIV/AIDS and STI Prevention and Care in Cambodia, 2001-2003

EXECUTIVESUMMAR YImpactThe findings of the evaluation clearly demonstratethat the home care programme inCambodia is having a significant positive impactat a number of levels:health. Many said that, before home care visitsbegan, they were bedridden.63% of PLHA felt that the home care teamhad helped to change their outlook on the future.• it is reducing the suffering of peopleliving with HIV/AIDS (PLHA) and improvingthe quality of their lives and the livesof their families and caregivers;"Now I am getting visits from the home care team,my health has improved and I am back at work. In factI am now looking for promotion"[man, age 31, Chamkarmon]• it is increasing understanding ofHIV/AIDS by helping to forge linksbetween care and prevention andreducing discrimination against PLHAin the community;• by providing social and economicsupport, it is helping to empower someof the poorest and most disadvantagedindividuals and families in the community."The Home Care Team only gives us a little help,but it makes a big difference to us; I think it's thedifference between life and death"['retired' sex-worker, age 43, homeless, now married with 3children; Wat Phnom]Of the 100 PLHA interviewed in PhnomPenh, 85% said that they were better able tolook after themselves, after being visited by thehome care team.83% said that home care visits had helpedto improve how much they feel in control oftheir lives.72% of PLHA said that home care visits hadimproved their general well-being and physical45% of PLHA said that the home care teamshad increased their comfort in sharing informationabout their HIV status with others.93% of family members of PLHA said thehome care team had added to their knowledge ofHIV/AIDS, particularly methods of transmission.More family members (42%) than PLHA(33%) reported reduced discrimination by thecommunity against them as a result of homecare visits.79% of caregivers felt that, following homecare team involvement, they could cope betteroverall with having a PLHA in the family."I used to be angry with her because I spent all mytime and money looking after her. The home care teamhas given me encouragement and support. I nowunderstand better and I can care for her. Withoutthem, it would have been impossible"[husband of PLHA, Tuol Kork]27% of PLHA (including a number of sexworkers) said that they now use condoms as aresult of their increased knowledge about HIVtransmission.pg 3

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia"After knowing that I am infected, I always ask allthe clients to wear a condom"[female sex worker, age 23, Kilometre 9]The time spent by the Home Care Teams inproviding care and welfare support is felt to beimportant in releasing children from some of theburden of care."The home care team help me continue withmy business of selling food; before (they startedvisiting), I couldn't even get out of bed. Without (theHCT) my children would have to leave school to lookafter me."[widow; age 36; Tonlé Bassac]CostsThe cost of delivering home care services inCambodia compares favourably both with thecost of providing outpatient services in publichealth facilities and with the costs of home careprogrammes in other countries. In addition, itis clear from the evaluation that the homecare programme is providing households ofPLHA with benefits in terms of financial andtime savings.The evaluation notes that the average costof providing urban home-based care services isestimated as $9.28 per home care visit, and$14.60 per visit for rural services. Estimates(Bunna & Myers, 1999) indicate that the averagecosts of hospital outpatient services are $15 perpatient-episode. A more realistic comparisonwith hospital out-patient treatment is providedby the cost associated with addressing thehealth needs of the patient using home-basedcare, which the evaluation estimates as $3.71per home care visit.It should be noted that the estimated costper home care visit was determined by totallingall related programme costs together withtechnical support costs from INGOs andLNGOs (including appropriate proportionsof salaries, commodities, transport andoverheads). Furthermore, the average costper home care visit includes the costsof improving the emotional, educational andsocial well-being of the patient (in addition toimprovements in physical well-being). It alsoincludes the costs of prevention and liaisonactivities in the community and the costsof building both organisational and technicalcapacity of MoH and NGO partners in theprogramme.The financial savings by households areprimarily due to changes in the use of traditionalhealers and in the use of medicines. Families andcare-givers reported average savings in time dueto home care provision of 3-4 days per month,and cost savings ranging between $0.80 - $1.30per week. Respondents receiving home carewho continue to use traditional healers, reportedsavings due to decreased and/or moreappropriate use of between $5.30 - $10.50per week.pg 4

EXECUTIVESUMMAR YKey ComponentsThe evaluation identified a set of keycomponents which have contributed significantlyto the success of the programme, andwhich should ideally be incorporated in itsexpansion. These are outlined below.This evaluation has noted that strongpartnerships exist at a number of levels in theHome Care programme:• between MoH/NCHADS, KHANA, WorldVision and the local NGOs who participate inthe programme• between KHANA and their partner NGOs whosupport the Home Care Teams• between the Home Care Teams and theHealth Centres at which they are based• between the government and NGO teammembers who implement the programmeSuch partnerships have enabled scarceresources to be shared, and have ensuredthat the comparative advantages of each ofthe players have been effectively utilised.This has undoubtedly contributed to the costeffectiveness of the programme.Findings from this evaluation indicate thatthe selection of the right personnel andachieving the right mix of skills and experiencein the Home Care Teams is critical to successfulteam working and has been instrumental inproviding a comprehensive service to PLHA andtheir families.Launching the project only after adequateand appropriate training, supplementedby responsive, refresher training are keycomponents to maintain professionalism ofhome care provision.The Home Care Teams themselves identifiedthe support from community leaders as themost important factor contributing to thesuccessful implementation of their work.This evaluation found that volunteers arefulfilling a number of important roles in the homecare programme, such as referring clients,facilitating access to local authorities andestablishing links with community initiatives.The findings of this evaluation demonstratethe importance of, and demand for asupportive supervisory system to address themanagement and medical needs of theproviders of home-based care.Participatory reviews, monitoring andexternal evaluations have helped shape andimprove the home care programme.A flexible and responsive managementstructure has helped to ensure that theoutcomes of reviews are incorporated into theprogramme.Consistent technical and financialsupport has resulted in increased capacity ofthe NGOs to better manage their Home CareTeams, and of both MoH and NGO staff of theHome Care Teams to better manage their workprogrammes.The Home Care Network has played a vitalrole in helping to ensure co-ordination ofsupport, improve linkages and assist theprogramme to better meet the increasingdemands for improved care and support atlow cost.pg 5

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaKey Recommendations from the evaluation for improving andexpanding the programme are summarised below:Home Care NetworkIt is recommended that:• MoH includes drugs used in Home CareKits in the Essential Drugs list• The Home Care Network Group becomesan autonomous unit with its ownresources in order to ensure co-ordinationof technical support, improve linkswith other initiatives and facilitate monitoring.• The Municipal Health Department AIDSOffice begins to assume responsibilityfor co-ordinating the Home CareNetwork in Phnom Penh• Central Medical Stores initiates steps toprovide drugs for Home Care Kitsthrough Health Centres• The Home Care Network Group initiatesa discussion on the criteria for homecare provision of prophylactic Bactrim toHIV patients in Cambodia, ensuring thatthere are clear guidelines for selectionand monitoring of patients.• Because of its capacity and presentinvolvement in the programme, KHANAis approached to provide technical andfinancial support to facilitate the expansionand relocation of the Home CareNetwork GroupHome Care ActivitiesIt is recommended that:• The Home Care Network Group initiatesa review process to clarify and agreestrategic priorities for home care activitiesand to rationalise the roles andresponsibilities of the home care teams• The Home Care Network Group reviewswith the HCTs the system of monitoringand reporting patient numbers and teamactivitiesReferrals, Supervision and TrainingIt is recommended that:• The Home Care Network Group strengthensthe hospital referral system by reinstatingthe system of attaching each ofthe HCTs to one of the main referral hospitalsin Phnom Penh.• Referral hospitals provide supportivesupervision to attached HCTs.Supervisors must be resourced andtrained in facilitative supervision• The HCNG implements a schedule ofongoing refresher training and orientationsto deal with emerging issues facingHCTs. KHANA, NGOs, MoH and otherministries could act as resources withfunding and support through the HomeCare Networkpg 6

EXECUTIVESUMMARY• The draft training pack used in initialtraining is updated and developed into atraining resource pack for use when thehome care programme is expanded• The AIDS Care Handbook is translatedinto English and 1000 copies are printedfor distribution to NGOs/IOs• Pictures from the Home Care Stories areincorporated into a flipchart for teachingpurposes by organisations working inthe field of AIDS care.• A module on "Managing ClientExpectations" is included as part of theongoing counselling training provided toHCTsProgramme ExpansionIt is recommended that:• MoH/NCHADS takes the main co-ordinatingrole in expanding the home care programmein Cambodia• NCHADS and partners ensure that keycomponents of the home care modelare incorporated when expanding theprogramme to the Provinces.• NCHADS and partners examine thecost-benefits of different models forexpansion. Adapting the current modelto improve cost-effectiveness in ruralareas should be seriously considered.Volunteer ExpansionIt is recommended that:• MoH/NCHADS and partners supportMoH/NGO Home Care Network Groupsto co-ordinate activity at Provincial level.• The Home Care Teams expand andstrengthen Volunteer involvement in theHome Care programme in Phnom Penhand the Provinces• The maximum number of Volunteers perteam is increased from five to ten andVolunteers are encouraged not to workmore than 10 days per month• Volunteers begin to assume more of thesocial support responsibilities of homecare provision, in addition to many of thenon-patient-related activities• Donors explore the possibility of trialinga sub-sector-wide approach to fundingthe home care programme in Cambodia* The Alliance increases its financialsupport to KHANA for building localNGO capacity, and maintains its presentlevel of technical support• The Alliance considers using theCambodian Home Care Model in otherAIDS care programmes that they support.• The HCTs review and upgrade the skillsof the Volunteers, to enable some toprovide basic counselling to PLHA andto support peer counselling by PLHApg 7

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia1 BACKGROUND1.1HIV/AIDS in CambodiaCambodia has one of the fastest growing HIVprevalence rates in the world. Results from thelatest Surveillance Survey 1 indicate that approximately170,000 Cambodians are now infectedwith HIV, giving an adult HIV prevalence rate ofaround 3.5%.Cambodia has also one of the lowest rates ofhealth utilisation in the world. Lack of funds forsalaries, supplies and maintenance severely limitsthe amount of care and medicines which can beprovided by the health system. For the poorestCambodians, costs of health care account forapproximately 28% of household expenditure 2 .The AIDS epidemic will further exacerbate thiscost burden on many households.The impact of the rapid spread of the epidemicin Cambodia is drastic. During the year 2000 anestimated 12,000 people with AIDS will seek careand support, thus increasing the pressure on ahealth care system that currently provides a totalof only 8,500 beds for all medical conditions 3 .The HIV/AIDS epidemic in Cambodia is stillrelatively recent. HIV was first reported inCambodia in 1991 and the first cases of AIDSwere diagnosed in late 1993. During that year thefirst 5-year National AIDS Plan was developedand the HIV/AIDS Co-ordinating Committee(HACC) was established by a consortium of international,national and local NGOs.In 1998 the Ministry of Health established theNational Centre for HIV/AIDS, Dermatology andSTDs (NCHADS). The mandate of NCHADS is tooversee the response of the MoH as well as toprovide technical support to other governmentagencies and national partners. The NationalAIDS Authority (NAA), which replaced theNational AIDS Committee (NAC) and NationalAIDS Secretariat (NAS), was established inJanuary 1999 to oversee the nationalresponse, a key component of which is closeco-operation between government and nongovernmentagencies.A 2-year National Strategic Plan forSTD/HIV/AIDS was developed in 1998, under theco-ordination of MoH/NCHADS. This plan, whichwas a joint effort involving ministries, multilateralsand NGOs provides a framework for implementationand co-ordination for all partners contributingto the national response 4 . While Care and Supportfor PLHA is one of the 12 strategic areas, much ofthe focus is on policy, protocols, guidelines andmobilisation of donor support. The plan made noreference to government supported home careprogrammes.In March 2000, MoH/NCHADS developed thefirst draft of their Strategic Plan for HIV/AIDS andSTI Prevention and Care 2001-20035. AIDS Care,including Institutional and Home-based Care, isone of the eight areas of primary focus. HomebasedCare has its own set of strategic goals,which include supporting the extension andexpansion of the home-based care programmenation-wide, and the establishment of co-ordinationmechanisms for its implementation. ThisStrategic Plan, which indicates what can andshould be done in the health sector, is a significantstep towards institutionalisation of HomebasedCare in Cambodia.pg 81 Report on Sentinel Surveillance in Cambodia, NCHADS/MoH, 19992 Ministry of Health, 1998, The demand for health care in Cambodia: Concepts for future research,National Public Health and Research Institute3 UNAIDS (2000) Country Profile, "The HIV/AIDS/STD situation and the national response in the Kingdomof Cambodia", 3rd Edition - February 20004 National Strategic Plan STD/HIV/AIDS, Prevention and Care in Cambodia, 1998-2000

BACKGROUNDConcepts of Home-Based Care for PLHA 1.2The common misconception that people withHIV/AIDS will only benefit from highlyspecialised treatment, coupled with a generalfear of contagion, has often resulted in verticalAIDS programmes, with a disproportionateemphasis on prevention, and with care beingrestricted to dedicated institutions. Evidencefrom other countries indicates that this approach,which encourages the attitude that PLHA shouldbe segregated from the community, is inappropriate,unsustainable and unethical.1.2.1 Comprehensive CareAcross the ContinuumIn an effort to address this issue WHO andothers have, for the past decade, been promotingthe concept of "Comprehensive CareAcross the Continuum". This approach aims tolink a network of providers and services tocomprehensively address the care needs ofPLHA and their caregivers in a range of environments.Comprehensive care should also includereferrals between home or community and thehospital, and vice versa, effective dischargeplanning, and appropriate follow-up. As far aspossible, the approach should consist of fourinterrelated elements 6 :• Clinical Management, including earlydiagnosis and rational treatment of HIVrelatedillnesses and follow-up care• Nursing Care to promote and maintainhygiene, nutrition and infection control,to provide palliative care and healtheducation to home carers• Counselling, including psychosocialsupport to PLHA and their families, toreduce stress and anxiety, to promotepositive living and risk reduction strategies,and to empower individuals tomake informed choices for their futures• Social Support, including materialassistance, information and referral,linking into support groups and services.The continuum of care was envisaged as adynamic set of support services that PLHA andtheir families can access. It should be noted thatthis is an idealised situation; the approachadopted in a particular country will depend onthe prevailing needs of patients and the realitiesof health care provision.1.2.2 Lessons learned from otherhome care programmesThe limited number of evaluations of homecare programmes to date have revealed a numberof lessons learned:• ensure that any new initiative is integratedinto existing or planned governmenthealth systems• strong linkages should be establishedat the onset of the programme withhospitals and other health services• home care staff should have an appropriatemix of clinical and psychosocial skills5 Ministry of Health/NCHADS Draft Strategic Plan for HIV/AIDS and STI Prevention and Care in Cambodia, 2001-20036 Osborne et al. "Models of care for patients with HIV/AIDS". AIDS 11, 1997pg 9

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiain order to adequately address all thecomponents of the approach• labelling home care services as exclusiveto PLHA can generate negative reactionsfrom others and foster discriminationagainst PLHA• support and care of HIV+ people is vitalto maximise the impact of preventionactivities. Any coherent response to theHIV/AIDS epidemic should seek to linkcare to prevention. 71.2.3 Limitations of home careprogrammesHome care programmes in other countrieshave generally been based on one or other oftwo models. Where there was a strong traditionof Community Based Organisations (CBOs),home care programmes have evolved using agrassroots approach. In other situations, wherethere are established government outreachprogrammes, home care for PLHA hasbeen added as an additional activity. Boththese approaches have limitations. Grassrootsapproaches are often limited in their capacity toscale up, and sometimes fail to make successfullinks with existing health structures. Evaluationsof hospital outreach schemes report that theyare relatively costly, often fail to mobilise communityresources, and do not place sufficientemphasis on counselling and social support 8 .A home care programme which, at the onset,links grassroots organisations with existing publichealth services, and encourages shared ownershipis more likely to achieve sustainability,impact and cost effectiveness.1.2.4 The Cambodia situationThis approach of comprehensive careacross the continuum has provided a successfulframework for both policy and implementationof AIDS-related programmes in SE Asia,India and Sub-Saharan Africa. The approach isparticularly suited to Cambodia 9 , which is characterisedby:• a severe shortage of hospital beds tocope with the number of predicted AIDSpatients (there are less than 1500 beds inPhnom Penh available for all medicalconditions)• a population where only an insignificantminority of PLHA are able to affordcurrent prophylactic drug therapies• a high incidence within PLHA ofadvanced opportunistic infections,largely untreated due to the lowcapacity of health services• existing familiarity with the majorityof common symptoms associatedwith HIV/AIDSCambodia has a rapidly increasing numberof PLHA presenting with a range of commonsymptoms including headaches, fever, diarrhoea,skin and oral infections and weight loss.The typical pattern of illness is a series of minorinfections which will respond if the right treatmentis provided, followed by more virulentinfectious diseases leading to rapid declineand death.Even if sufficient hospital beds werepg 107 Gilks et al. "Care and Support for People with HIV/AIDS in Resource-Poor Settings", 19988 Cost and Impact of Home-Based Care for People Living with HIV/AIDS in Zambia, 19949 Joint Ministry of Health/NGO Pilot Project on Home and Community Care for People with HIV/AIDS, Cambodia, February 1998-February 1999.

BACKGROUNDavailable, there is a strong case to be made formanaging minor illnesses at home, where thecare is likely be cheaper and more convenient(for both patient and family), and where patientswill be less exposed to other infections.Similarly, as the patient approaches the terminalstage of the disease, many peopleexpress a preference for palliative care at homeamongst family members, rather than theanonymity (and expense) of death in hospital. 10The formative thinking behind the HomeCare Model in Cambodia was based on theframework of continuum of care and its potentialapplication to the Cambodia situation,coupled with an awareness of the limitationsand lessons learned from other programmes.The following section provides an outline of thedevelopment of the Cambodia programme.The Home Care Model in Cambodia 1.31.3.1 OriginsIn early 1997, discussions on establishinghome based care for PLHA in Cambodia, wereinitiated within WHO, and channelled throughthe HIV/AIDS Co-ordinating Committee (HACC)Sub-Group on Counselling & Care. Thesediscussions sought to bring together local andinternational NGOs and involve MoH/MHD indeveloping a pilot project to be implementedinitially in Phnom Penh. In bringing together theprivate and public sectors, it was felt that scarceresources could be shared, and the comparativeadvantage of different players could beutilised more effectively. 11• there was a need to bridge conceptualgaps between NGOs and the publicsector, to build trust and to foster understandingof the limitations and potentialresources of each of the players• there were few, if any, hospital outreachservices to which home care activitiescould be attached• existing CBO activities were neitherstrong nor well institutionalised• there were limited facilities for voluntarytesting and counsellingThere were a number of challenges to befaced in developing the home care project:• the HIV/AIDS epidemic in Cambodia wasat a very early stage, and care was not yeton the national agenda. It was thereforedifficult to find funding or motivation foranything other than prevention activities• there was limited commitment fromMOH/MHD for home based care forPLHA• there was little enthusiasm fromeither management or physicians inthe referral hospitals to be part ofthe continuum of care10 AIDS Action, May 1996. "Home and Hospital"11 Joint Ministry of Health/NGO Pilot Project on Home and Community Care for People with HIV/AIDS, Cambodia, 1999, op.cit.pg 11

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia• the National AIDS Programme wasseverely underfunded by the government• although the NAP had funds for AIDSrelatedactivities, there was no budgetline for care and support to PLHA1.3.2 Pilot ProjectAgainst this backdrop, a one-year pilothome care project was launched in February1998, implemented by a partnership of MoHand NGOs, with technical and financial supportfrom DFID and WHO. The theoretical frameworkwas the Continuum of Care, but the projectdesign was based on lessons learned from othercountries, particularly Thailand, Uganda andZambia. The objectives of the project were foremostto pilot appropriate home care services forPLHA and other chronic conditions, but also totrial a model of health care in which NGOs andgovernment acted in partnership.Eight teams were formed, made up of stafffrom 7 NGOs and nurses from 8 health centresin Phnom Penh. The teams are based at thehealth centres (selected by MHD), but most oftheir work involves providing home-based careto patients and affected families in the communitiesserved by their respective health centres.The pilot project was initiated and co-ordinatedby the WHO Project Co-ordinator in close partnershipwith the AIDS Care Unit of NCHADS.1.3.3 Post-pilot Home Care ProgrammeNCHADS were given responsibility for implementation.KHANA, the linking organisation of theAlliance, assumed responsibility for providingtechnical and financial support to local NGOs, andcontinued to work in partnership with NCHADS.The Home Care programme now consists of10 urban Home Care Teams (HCTs), in PhnomPenh and a rural pilot of 1 HCT in MoungRussey District in Battambang Province. All theteams are composed of 2 government nursesworking 50% time on the programme, and 3NGO HIV/AIDS staff. The urban teams are locatedat 9 Municipal Health Centres spreadthroughout the city. For patient visits, each HCTsplits into two groups of 2 staff, and patients arevisited by one or other of the groups an averageof 3 times per month. The teams carry simplemedicines and supplies in specially designedHome Care Kits and provide palliative care tochronically ill patients, of whom PLHA nowcomprise approximately 80%. Counselling,education and welfare support are also part ofthe constellation of home care services providedby the teams.Monitoring the urban programme is conductedby a group, representing NCHADS,MHD, KHANA, Health Centre Managers and theparticipating NGOs. Financially, each team isthe responsibility of an NGO, and all teamexpenses, as well as salaries and transportcosts of NGO staff, are administered throughgrants from KHANA (7 teams) and World Vision(3 teams). Salaries and transport costs of governmentstaff are subsequently administeredthrough the Municipal Health Department.pg 12WHO support to the project ended inFebruary 1999, at the end of the pilot phase. Coordinationof the project was taken over by theMinistry of Health, and the AIDS Care Unit of1.3.4 Project ReviewsIn July 1998, a participatory review of theproject was conducted, with all stakeholders

BACKGROUNDgiven the opportunity to participate and to makerecommendations. The recommendationsincluded restructuring the teams to rationaliseclient case loads, restructuring the supervisoryand feedback systems and providing furtheron-the-job training and updates. Theseoutcomes were incorporated into the projectimplementation framework.In December 1998, a 2-week evaluationof the project was carried out by a WHOconsultant. The review concluded that homeand community care for PLHA in Cambodiawas essential and that the home care projectshould be strengthened in Phnom Penh andexpanded to selected provinces. It was alsorecommended that a more rigorous evaluationshould be conducted to analyse themechanisms of the model and to assessthe cost-effectiveness of the project.A review 12 of the project was conducted bythe Project Committee at the end of the pilotphase in Feb 1999. The review noted that themajority of the objectives had been met withinthe timeframe and concluded that patients,NGO and government partners, health staff andcommunity leaders all reported a high level ofsatisfaction with the teams' activities, includingtheir effect on community awareness of HIVtransmission and prevention.The review also concurred with recommendationsof previous reviews, on the need toconduct a comprehensive evaluation of thehome care programme in Cambodia. In particular,there was an identified need to evaluate theimpact, cost and key components to help makedecisions on expanding the programme nationally.The objectives and design of this evaluationare detailed in the following section.12 Joint Ministry of Health/NGO Pilot Project on Home and Community Care for People with HIV/AIDS, Cambodia, 1999, op.cit.pg 13

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia2 EVALUATION DESIGNAND METHODOLOGY2.1Purpose of the evaluationThe International HIV/AIDS Alliance commissionedthe evaluation of the Home Care Modelused by NGO/MoH Partners in Cambodia. Theprimary purpose of the evaluation, which wasagreed in consultation with NCHADS, is toassist Home Care Partners in formulating astrategy to expand and improve care and supportto families affected by HIV/AIDS inCambodia. The evaluation may also be used byother Ministries, NGOs and international donorsto shape national strategy on Home Care. It isintended that the evaluation provides a nationaloverview, which will be supplemented by morelocalised findings from the KHANA Partner NGOParticipatory Reviews in July 2000.The expanded focus on home-based care inthe recent MoH/NCHADS Strategic Plan hasresulted in increased donor interest in this area.The AIDS Care Unit of NCHADS is in theprocess of formulating a strategy for expandingthe Home Care programme to selectedprovinces. It was agreed, in consultation withNCHADS, that the findings of this evaluation willbe used to help guide and shape the expansionstrategy.The evaluation was designed in consultationwith NCHADS, KHANA, Alliance, USAID and theNational Institute of Public Health (NIPH), withinputs from other stakeholders in the programme.The approach of Comprehensive CareAcross the Continuum (outlined earlier in thisreport) provided the theoretical basis for thedesign. Other provisional issues to be evaluatedwere drawn from reviews of other home careprojects and earlier reviews of the Cambodiapilot project, as well as preliminary discussionswith the key stakeholders from government andnon-government agencies.2.2 ObjectivesThe objectives of the evaluation were agreedwith NCHADS and the Alliance, and were verifiedby other key stakeholders. The primaryobjectives are to evaluate:• The impact of the programme in PhnomPenh and Battambang• The cost of the programme and the costsavings to families of people affected byHIV/AIDS who receive Home Care• The key components of the Home CareModel used in Cambodia that need tobe considered in order to successfullyreplicate or scale-up this approach.pg 14

EVALUATION DESIGNAND METHODOLOGYDesign Framework 2.3DATASOURCESIMPACTPROGRAMMECOSTSCOST SAVINGSKEYCOMPONENTS/PROGRAMMESTRENGTHENING& EXPANSIONPatients & familiesCase Studies ofPLHA and families,In-Depth Interviewswith PLHA andcarers, ParticipantObservation ofHome Care visitsCase Studies ofPLHA and families,In-Depth Interviewswith PLHA andfamiliesCase Studies ofPLHA and families,In-Depth Interviewswith PLHA andfamilies, ParticipantObservation ofHome Care visitsCommunityIn-Depth Interviewsand focus groupdiscussionswith communityleaders (PhumLeaders, VillageHeadmen), Monks,Achaa 13In-Depth Interviewsand focus groupdiscussionswith CommunityLeaders (PhumLeaders, VillageHeadmen), Monks,AchaaHome Care TeamsDocument Review,Focus GroupDiscussions withHome Care TeamsDocument ReviewFocus GroupDiscussions,Document reviewDocument Review,Focus GroupDiscussions withHome Care Teams,Attendance atmonthly HomeCare TeamCo-ordinatorsmeetingsVolunteersFocus GroupDiscussionsFocus GroupDiscussionsHealth CentreManagers; HospitalPhysiciansIn-DepthInterviewsIn-DepthInterviewsPartners / OtherStakeholders(NCHADS, MoH, MAO,PAO, PAC, KHANA,Partner NGOs, WOMEN,IDA, KRDA, World Vision,Maryknoll, Servants, FHI,HOPE, MSF, UNAIDS,USAID, WHO, MHD,Key-InformantInterviewsDocumentReviewDocument Review,Key-InformantInterviewsKey-InformantInterviewsKey-InformantInterviewsAttendance atmonthly HomeCare NetworkCo-ordinationmeetings,Document ReviewFrench Co-operation)PLHAnot receivinghomecareIn-Depth Interviewswith PLHA attendinghospital who are notreceiving home careIn-Depth Interviewswith PLHA attendinghospital who are notreceiving home care13 Lay Priestspg 15

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia2.4Evaluation ActivitiesThe evaluation team consisted of a full-time team leader supported by a key representative fromMoH/NCHADS, a Health Economist from USAID and two NGO representatives, all of whom wereseconded part-time to the evaluation. In addition, specific evaluation inputs were provided byrepresentatives from KHANA, FHI, Centre of Hope and NIPH.Over a 2 month period, the following evaluation activities were conducted in Phnom Penhand Battambang Province.Phnom Penh12 Participant observations of home-care visits100 In-depth interviews, using semi-structured questionnaires,with home-care patients and families1 Case-study of PLHA10 In-depth interviews, using semi-structured questionnaires withPLHA not receiving home care4 Focus group discussions with home-care teams1 Focus group discussion with home care volunteers15 In-depth interviews with local community leaders, including village headmen,group leaders, monks, head of women's association, pagoda committeemember, district governor31 Key-informant interviews with stakeholders & partners3 In-depth interviews with Health Centre Managers2 In-depth interviews with Hospital PhysiciansAttendance at 3 project/network co-ordination meetingsAttendance at 2 Home Care Team co-ordination meetingsDocument review of HC guidelines, annual and monthly reports, financial records, referralforms, patient records, strategic plans, notes to project/network co-ordination meetings,notes to Home Care Team co-ordination meetings, workshop reports, previous evaluations.pg 16

EVALUATION DESIGNAND METHODOLOGYBattambang5 Participant observations of home-care visits8 In-depth interviews, using semi-structured questionnaires, withhome-care patients and families1 case study of PLHA7 In-depth interviews with PLHA who ceased to receive home care2 Focus group discussions with KRDA home-care team and volunteers1 Focus group discussion with community leaders from Ko Koh Commune4 n-depth interviews with Hospital Directors, physicians, AIDS counsellor5 In-depth interviews with representatives from Provincial AIDS Office. PAC, PAS, DoHDocument review of project reports, financial reports, notes to meetings, back to office reports.Data Collection2.52.5.1 In-depth interviews with patientsand familiesIn Phnom Penh, each of the 10 Home CareTeam Co-ordinators provided a list of patientswho were currently being visited by their team.The Co-ordinators were asked to exclude nonHIV/AIDS patients and those who were hospitalisedor too ill to be able to answer questions.Ten patients were randomly selected from thelist for each of the 10 teams, providing a sampleof 100. It is estimated that there are approximately500 patients who would have been suitablefor interview, so the study sample representssome 20% of the population.Of the 100 PLHA who were interviewed, 43had family members present during the interviews,and a further 22 were accompanied bycaregivers from outside the family. Specificquestions in the interview guide were directedto these family members and caregivers.The 100 in-depth interviews were conductedby 10 interviewers (10 interviews each) drawnfrom the Home Care Team Co-ordinators. Theinterviewers were supervised throughout thedata collection period by 3 members of theEvaluation Team and the Alliance TA (C&S). Theinterviews were allocated by the EvaluationTeam to ensure that the Team Co-ordinators didnot interview patients from their own teams.pg 17

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaInterviewing a home care patient in Phnom Penh.Members of the Home Care Teams accompaniedthe interviewers to the homes of the selectedpatients, but stayed outside during the interviewsThe interviewers used a semi-structuredquestionnaire with both closed and open-endedquestions (see Appendix 1a). The questionnairewas developed by the Evaluation Team withtechnical input from NIPH, NCHADS, KHANAand the Alliance. The questionnaire wastranslated into Khmer and pretested usinghome care patients not selected in the interviewsample. The interviewers were trained by theEvaluation Team in interview techniquesand how to use the questionnaire and weregiven practice in acting as interviewerand respondent.The Evaluation Team supervised approximatelyone third of all the interviews conductedand reviewed the interviews immediately afterwardswith the interviewers. Many of the intervieweeslived in conditions of poverty, sometimesextreme poverty. Some were sex-workers,and a significant number were homeless. Itwas difficult, sometimes impossible, to conductsome of the interviews with any degree of privacy.Neighbours and/or family were often presentand the interviewers sometimes had to changethe subject or postpone sensitive questionsuntil there was a greater measure of privacy.However, the supervisors and interviewersreported that confidentiality was often less of anissue than might have been expected. Many ofpg 18

EVALUATION DESIGNAND METHODOLOGYthose interviewed were extremely open abouttheir HIV status, and this seemed to be acceptedby neighbours and relatives without commentor evidence of discrimination.In Battambang, the members of theEvaluation Team conducted eight interviewswith patients and families drawn from differentcommunities throughout Moung Russeydistrict where the KRDA Home Care Teamoperates. Convenience sampling was used toselect the patients. The number of interviewswas restricted by the limited time spent inBattambang, and the long distances travelledbetween interviews.men, women's association leaders, monks andachaa (lay priests), in the districts where thehome care teams operate. The interviews wereguided by a semi-structured questionnaire withboth closed and open-ended questions (seeAppendix 1b).In Battambang, the Evaluation Teamconducted a focus group discussion with 14community leaders representing all 7 villagesfrom Ko Koh Commune in Moung RusseyDistrict. The community leaders included thedistrict governor, village headmen and villageassociation leaders.2.5.2 Participant observation of homecare visitsIn Phnom Penh 12 observations of homecarevisits were conducted. Five of the tenhome care teams were visited by members ofthe Evaluation Team and also by external evaluatorsseconded from FHI/Impact.In Battambang, the Evaluation Team conducted5 observations of home care visits withthe Moung Russey Home Care Team.The participant observations were guided bychecklists developed by the Evaluation Team, inconsultation with the external evaluators whohad considerable experience and expertise inhome-based care.2.5.3 In-depth interviews and focus groupdiscussions with community leadersThe Evaluation Team conducted a total of 15interviews in Phnom Penh with local authorityand community leaders, including village head-2.5.4 In-depth interviews with PLHA whowere not receiving home based care.For comparison purposes, a small numberof PLHA who were not receiving home basedcare were interviewed. The numbers (10 inPhnom Penh, and 7 in Battambang) were toosmall to be considered a control group.Nevertheless, these interviews served toprovided a useful basis for comparison andhelped to triangulate findings from otherdata sources.The numbers were restricted largelybecause of both logistic and ethicalconstraints in identifying and interviewingPLHA who were not being visited by homecare teams. In Phnom Penh, 10 identifiedPLHA attending as out-patients or in-patientsat Sihanouk Hospital were interviewed using asemi-structured questionnaire. The patientswere first screened to ensure that they werenot receiving home based care.In Battambang, due to internal problems ofthe local NGO partner, one of the two homecare teams ceased to operate 4 months ago,pg 19

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiaafter the team had been visiting patients forover 3 months. With the assistance of staff fromthe District hospital, 7 patients who had beenreceiving home care visits from the team werelocated, and interviewed using a semi-structuredquestionnaire. The objective was to discernwhat change (if any) there had been in thequality of their lives since the home care teamhad ceased visiting.2.5.6 In-depth interviews with HealthCentre Managers and HospitalPhysiciansIn Phnom Penh, 3 Health Centre Managers and2 hospital physicians were interviewed by the evaluationteam, using open ended semi-structuredquestionnaires. In Battambang, the Evaluation Teaminterviewed 4 hospital managers and physicians.2.5.5 Focus group discussions with homecare teams and volunteers.Four focus group discussions were held withall members (not including volunteers) of thehome care teams in Phnom Penh, clusteringeither 2 or 3 teams together. The discussionguide is detailed in Appendix 1c of this report. Aseparate focus group discussion was held witha representative sample of 16 volunteers drawnfrom 8 of the home care teams.Two focus group discussions were held withall the members (including volunteers) of thehome care team in Moung Russey.2.5.7 Key informant interviewsIn addition to those listed above, a further 31key informants in Phnom Penh and 5 inBattambang were interviewed by the EvaluationTeam. The informants, who included programmemanagers, technical advisors, financialadvisers, donors, and policy makers were purposivelyselected from MoH, MHD, NCHADS,KHANA, bilateral and multilateral donors,INGOs and local NGOs who are partners and/orstakeholders in the home care programme inCambodia. The interviews elicited a range ofissues deriving from the evaluation objectives.2.6Limitations of the evaluationpg 20The absence both of baseline data and acomparable control group imposed methodologicaldifficulties in evaluating the impact ofthe programme. The logistical and ethical difficultiesassociated with obtaining a suitablecontrol group have been outlined elsewhere inthe report.The measurement of impact therefore reliedextensively on the perspectives of the PLHA whoare the primary stakeholders in the home careprogramme. As the patient interviews were conductedby the home care team co-ordinators,there was the possibility of interviewer bias. Aneffort was made to reduce bias by not allowingteam co-ordinators to interview their own patients,and by close supervision of approximately onethird of the interviews by the evaluation team.There was some variation in the quality of theinterviews, due largely to the lack of privacy, thesensitivity of the subject matter and the healthstatus of the interviewees. Nevertheless, datacollected in these interviews was triangulated

EVALUATION DESIGNAND METHODOLOGYwith data from other sources, and found tobe consistent.The presence of the evaluation team membersduring observations of home care visitsmay have affected the quality of the interactionsbetween the home care team and the patients.The quality of the monthly statistics onpatient numbers and visits was sometimesinconsistent. On checking a sample of the homecare record sheets with the monthly statisticalsummaries, some arithmetical errors werefound. One of the home care teams countedevery person they interacted with professionally(either a PLHA or merely someone inthe community requesting information ormedicines) as a "patient". Another team countedany professional interaction as a "visit". Theevaluation team attempted to correct theseanomalies, in collaboration with the Khana staffand home care co-ordinators. When the numberof patients and visits are averaged over 12months for the 10 teams it is estimated thatthese errors will amount to less than 5%.Finally, although the study explored impactrelated to improvements in a number of qualityof life indicators for PLHA and their families,no attempt was made to measure lifespanor health status of PLHA visited by homecare teams compared with those who did notreceive visits.pg 21

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia3 IMPACT"Before the Home Care Team came I spent toomuch money on medicines and hospital visits; homecare has changed my life; I can now look after myselfand my child", [man, age 30; abandoned by wife whenshe discovered he had AIDS; Tonlé Bassac 14 ]Interviews with approximately 120 PLHA, 60family members and caregivers, 30 communityleaders, and observations of 17 home carevisits clearly demonstrate that the home careprogramme in Cambodia is having a significantimpact at a number of levels.• It is reducing the suffering of PLHA andimproving the quality of their lives and thelives of their families and caregivers;• it is increasing understanding of HIV/AIDSby helping to forge links between care andprevention, reducing discriminationagainst PLHA in the community;• by providing social and economic support,it is helping to empower some of the poorestand most disadvantaged individualsand families in the community.The following sections of the report willexplore impact indicators in more detail.pg 2214 Area in Phnom Penh visited by one of the Home Care Teams, and consisting largely of unregulated settlements

IMPACTPeople Living with HIV/AIDS (PLHA) 3.1The primary stakeholders in the home careprogramme are PLHA, and it is with them thatthe programme is having the greatest impact."Home Care is crucial to my life; if it wasn'tfor the Home Care Team I'm sure I would be deadby now", [woman, age 37, Tonlé Bassac]While HIV/AIDS is not itself a disease ofpoverty, it often flourishes in conditions ofpoverty. Poverty increases vulnerability to infectionand limits the resources available to copewith disease. Poor people and marginalisedgroups often have the greatest difficulty accessingcare and support services. Studies showthat notions of blame for women with HIV mayinfluence the amount and quality of care provid-ed to women 15 . By treating women in theirhomes, the programme is increasing equitableaccess, and going some way to providingwomen-friendly services.An increasing proportion of PLHA referred tothe HCTs are women, who now make up 60% ofhome care patients in Phnom Penh. Because ofthe geographical areas in which the HCTs operate,the vast majority of PLHA visited by theHCTs are from the poorest and most vulnerablesections of society."The Home Care Team only gives us a little help,but it makes a big difference to us; I think it's thedifference between life and death", ['retired' sex-worker,age 43, homeless, now married with 3 children;Wat Phnom 16 ]15 Gilks et. al. 1998 op.cit.16 Area in Phnom Penh visited by one of the Home Care Teamspg 23

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia3.1.1 Improved Quality of lifeSpecific measurements of changes in qualityof life (QOL) for PLHA were beyond the scope ofthis evaluation. However, selected indicatorsfrom QOL tools 17 were included in the questionnaireused to guide the in-depth interviews withPLHA in Phnom Penh and Battambang.Of the 100 PLHA interviewed in PhnomPenh, 85% said that they were better able tolook after themselves, after being visited by thehome care team."They taught me which foods were good, showedme how to keep myself and my house clean and theyexplained why I should take more rest. I didn't knowenough about these things"[woman, age 35, Kilometre 6 18 ]83% said that home care visits had helpedto improve how much they feel in control oftheir lives."I used to get annoyed very easily. I felt there wasno hope. Now I am more hopeful and more at peacewith myself"[man, age 37, Psar Dam Tkov 19 ]"Before (I met the HCT), I wanted to kill myself,but after counselling I feel happier; I want to livelonger; I want to spend time with my family"[woman, age 38, Doun Penh 20 ]72% said that home care visits hadimproved their general well-being and physicalhealth. Many said that, before home care visitsbegan, they were bedridden."Before (home care visits started), I was seriouslyill. I just slept in one place. I couldn't even find theenergy to get up. I can now walk and do a little work"[man, age 37, Psar Dam Tkov]63% felt that the home care team hadhelped to change their outlook on the future."Now I am getting visits from (the HCT),my health has improved and I am back atwork. In fact I am now looking for promotion"[man, age 31, Chamkar Mon 21 ]"I was very weak when I found out I hadAIDS; I also became very depressed. TheHome Care Team gave me medicines and providedcounselling. I now feel the same as otherpeople; I can talk to others (about my HIVstatus)"[Pregnant woman, age 30, Tonle Bassac]pg 2417 "Psychosometric validation of the revised Functional Assessment of Human Immunodeficiency VirusInfection (FAHI) quality of life instrument", Quality of Life Research; 1997, Vol6:572-58418 Area in Phnom Penh visited by one of the Home Care Teams19 Area in Phnom Penh visited by one of the Home Care Teams20 Area in Phnom Penh visited by one of the Home Care Teams21 Area in Phnom Penh visited by one of the Home Care Teams

IMPACTWhen asked (in an open-ended question)how might things be different if they didn't havehome care support, 92% of respondents fearedthat life without home-care support would besignificantly more difficult. The main fearscited were:• isolation and having no-one to sharetheir problems with• not being able to access the medicationprovided by the teams• rapid deterioration in their health• increased stress and worries• feeling hopeless• loss of confidence• being unsupported• feeling discouraged and havingno-one who cared for them."The neighbours, and even my own family, used tobe afraid of my disease, but since education by thehome care workers they are now more sympathetic withme. Some even come to visit me and bring me food"[woman, aged 34, Stung Meanchey 23 ]"At first, my wife got angry with me when she foundout (that I was HIV+), but now she is caring for me.The home care team talked with her; it helped a lot"[man, age 31, Wat Moha Montrey 24 ]Nevertheless, it is evident that discriminationagainst PLHA is still prevalent in urban communities,and a significant number of PLHA are stillreluctant to reveal their HIV status. Half of thoseinterviewed keep their HIV status secret fromtheir community."Before (home care visits) it was just hopeless;I wanted to kill myself. Now I just want to keephealthy and look for a job again"[man, age 41, Kilometre 6 22 ]3.1.2 Reduced Discrimination33% of PLHA said that the home care teamshave been instrumental in reducing discriminationagainst them in the community. In addition,31% felt that home care visits had improved theway in which they are treated by their families. Itshould be noted that these percentages indicatethe extent to which existing discriminationhad been reduced, specifically as a result ofhome care intervention. Discussions with theHCTs and observations of interactions betweenPLHA and their families revealed that, for manyfamilies, no discrimination existed even prior tothe home care visits."I keep it a secret, because I'm afraid they mighthate me"[man, aged 37, Kilometre 9]However, 45% said that the home careteams had increased their comfort in sharinginformation about their HIV status with others.In many cases the PLHA only share informationwith other patients in support groups. However,an increasing number are willing to 'go public'."I now feel confident to tell others, so they cantake more care and prevent themselves from this.I have even said this on television"[woman, aged 38, Doun Penh 25 ]79% of respondents said they have recommended,or would recommend the home careteam to others.22 Area in Phnom Penh visited by one of the Home Care Teams23 Area in Phnom Penh visited by one of the Home Care Teams24 Area in Phnom Penh visited by one of the Home Care Teams25 Area in Phnom Penh visited by one of the Home Care Teamspg 25

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia3.2FamilyForty three family members of PLHA were interviewedduring the evaluation. Almost all (93%)said the home care team had added to theirknowledge of HIV/AIDS, particularly methods oftransmission. 42% felt that since home carevisits, the attitude of the community towards thefamily had improved. More family members(42%) than PLHA (33%) reported reduceddiscrimination by the community against themas a result of home care visits.79% of caregivers felt that, following homecare team involvement, they could cope betteroverall with having a PLHA in the family."I used to be angry with her because I spent all mytime and money looking after her. The home care teamhas given me encouragement and support. I nowunderstand better and I can care for her. Withoutthem, it would have been impossible"[husband of PLHA, Tuol Kork 27 ]"Because of the home care team, things are betteraround us. Before, (the community) always used todiscriminate against our family"[wife of PLHA, Psar Dam Tkov 26 ]3.3 CommunityUsing a semi-structured, open ended questionnaire,the evaluation team interviewed 15community leaders who knew of the HCTs,drawn from eight of the districts in Phnom Penhwhere the HCTs operate. The community leadersincluded village headmen, group leaders,monks, head of women's association, pagodacommittee member, district governor.All the community leaders were familiar with,and could list the main activities of the HCTs.The HCTs themselves generally initiated firstcontact with the community leaders, althoughone leader had sought out the HCT because hesuspected that he was infected and wantedtheir assistance.Two of the leaders said that they had notbelieved that there were any infected people intheir communities and had initially been wary ofcontact with the HCTs. The HCTs concernedhad persisted in their efforts to forge links withthe community leaders, had gained their trust,and are now welcomed into the community.Meetings between the HCTs and communityleaders generally occur twice or three times amonth, although three leaders said that theymeet the HCTs twice a week.Twelve (80%) of the community leaders hadreferred families to the HCT in their areas, and itappears as if the number of referrals from communityleaders is increasing.pg 2626 Area in Phnom Penh visited by one of the Home Care Teams27 Area in Phnom Penh visited by one of the Home Care Teams

IMPACTThe community leaders were unanimous intheir appreciation of the work of the HCTs. Theysaid that, despite some initial reticence, theywere happy and proud to have HCTs working intheir areas."Their work is really helping my community bytaking some of the burden from the patients, and alsofrom the local authorities"[Village Headman, Krorl Kor Village, Kilometre 6]"To begin with, the local authorities would not allowthe home care team into the community, but now theteam is welcomed and respected"[Monk, Proyouvong Pagoda, Phnom Penh]Of the 100 PLHA interviewed, many said thatthey no longer had sexual relations. For some,the reason was the death of their partner, whileothers said that they had lost sexual desirebecause of illness. However, 27% (including anumber of sex workers) said that they now usecondoms as a result of their increased knowledgeabout HIV transmission."After knowing that I am infected, I always ask allthe clients to wear a condom"[female sex worker, age 23, Kilometre 9]3.3.2 Reducing discrimination3.3.1 Linking prevention and careIt was clear that the HCTs are helping toforge links between prevention and care in thecommunities in which they operate. Thirteen(87%) of the community leaders in Phnom Penhspecifically mentioned that the HCTs were helpingincrease understanding of preventive measures.Three leaders noted that, until the HCTsstarted visiting, people didn't believe that therewas AIDS in their area. Two leaders emphasisedthat most of the knowledge of HIV/AIDS andSTDs in their areas was due to the HCTs.When the community leaders were askedwhat difference (if any) the HCT has on communityattitudes towards PLHA, they mentionedreduced discrimination, reduced anger, reducedfear, and increased support, understanding andsympathy towards PLHA."They (community members) used to be afraid ofpeople with AIDS , but when they see the home careteams visiting patients, and they begin to understandabout transmission, they don't fear the patients anymore; they are showing compassion, visiting thepatients and even giving them help"[Group Leader, Steung Meanchey Village, Phnom Penh]"People didn't believe we had AIDS here. Now theyare more brave in talking about condoms and using them.Before, their knowledge about AIDS was just fromtelevision. The HCT have brought them the reality"[Village Headman, Cham Carmon, Phnom Penh]Four of the leaders felt that it was importantthat the HCT didn't focus exclusively on PLHA,but visited other chronically ill patients. Thisconfirms findings from a previous review of theprogramme 28 .28 Joint Ministry of Health/NGO Pilot Project on Home and Community Care for People with HIV/AIDS, Cambodia, 1999 op. cit.pg 27

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia3.3.3 Community MobilisationIt was evident that the HCTs had been influentialin encouraging neighbours to provideencouragement and a little food and support toPLHA. However, the community leaders feltthat there was little evidence of systematiccommunity mobilisation to support PLHA beinginitiated by the HCTs, and felt that this shouldbe a future role of the home care programme.They suggested that volunteers, with appropriatesupport from the HCTs, could play a majorrole in identifying and forging links with existingcommunity resources.3.4ChildrenChildren affected by AIDS are at the extremeend of the spectrum of vulnerability. As thesickness of the parent(s) progresses, the effecton the lives of their children is often drastic.They may have to leave school to care for theirparents, and/or may have to start work. Somemay have to leave home, even before the deathof one or both parents. Discussions with HCTsreveal that dealing with issues related tochildren is becoming an increasing part oftheir workload.Although children were not a major focus ofthis evaluation, a short section of the questionnairefor PLHA was devoted to this issue. Of the100 PLHA interviewed, 67 had children in thefamily. The findings outlined below refer to these67 families.• In 21% of the families, children havehad to start working since the patientbecame sick.• In 30% of the families, the children havehad to provide care, or take up majoradditional household duties.• 40% of the children have had to leaveschool, or take significant periods awayfrom school.• 40% of the families said that since thepatient became sick, the children havehad to go without certain things (food,clothes, books etc).• In 28% of the families, one or more childrenhave had to leave home.The 67 families were asked if participating inthe home care programme had resulted in anychanges for the children in the household. 34%clearly stated that the home care programmehas directly improved the quality of life of childrenin their families. Note that this should notbe interpreted as meaning that 66% feel that theprogramme has had no effect on the quality oflife of the children. It is often difficult (especiallyin an interview situation) to spontaneously makecausal connections, for example linking homecare provision to improved health of parent andimproved capacity of family to provide care, toreduced burden on children, resulting onimproved quality of life of the children.pg 28

IMPACTFor the 34% who acknowledge these causalconnections, the time spent by the HCTs inproviding care and welfare support is felt to beimportant in releasing children from some of theburden of care. The provision of money helps tobuy clothes for the children and pay for schooling,while the provision of medicines helps toimprove health and well-being of the parent,enabling them to devote energy to caring for thechildren. Finally, psychosocial support helpsfoster more positive attitude about the future."The Home Care Team help me continue with mybusiness of selling food; before (they started visiting),I couldn't even get out of bed. Without (the HCT) mychildren would have to leave school to look after me."[widow; age 36; Tonlé Bassac]Health System 3.5Over 2000 families have been visited duringthe 2 years of the project. The total caseload ofthe ten Home Care Teams is now around 800each month.Patient NumbersMarch 1999 - February 2000Figure 1pg 29

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaPercentage of patients known to be HIV+Figure 2The proportion of HIV+ patients hasincreased over time and is now approximately80%.In discussions with HCTs, Health Centremanagers, hospital physicians, communityleaders, project partners, and with representativesfrom Ministry of Health, Municipal HealthDepartment and multilaterals, all indicate thatthe Home Care Programme is having a positiveimpact on reducing the burden on the healthsystem in Phnom Penh. However, in theabsence of quantitative data, this is difficult toverify. In order to monitor impact on the healthsystem it is recommended that data on homecare provision is incorporated into the monitoringand surveillance systems in Hospitals andHealth Centres in Phnom Penh.Nevertheless, there is some qualitativeevidence that home-based care is making adifference. There are some indications fromhealth centre and hospital staff that home carepatients are presenting less frequently for minorproblems. Senior representatives from MHDbelieve that the Home Care programme ishelping to reduce the numbers of bedsneeded for AIDS patients in Phnom Penh,and indicate their full support to the programme.pg 30

IMPACT3.5.1 Access/coverageWithout comprehensive quantitative data onthe numbers of PLHA in each of the districts inPhnom Penh in which the HCTs operate, it is difficultto measure the degree of coverage of thehome care programme.However, some rough estimates can bemade from aggregated data. It is estimated thatthere are approximately 4000 people withsymptomatic HIV infection 29 , of whom between20%-30% (i.e. 800 - 1200) are living in PhnomPenh. The HCTs are currently visiting 800patients, of whom about 80% (i.e. 640) are HIV+and are generally symptomatic. These estimat-ed figures indicate that the HCTs are reachingbetween 50%-80% of their target audience inthe city.Discussions with community leaders, withthe HCTs and with the Volunteers during thisevaluation support this estimate. Of the 15 communityleaders interviewed in Phnom Penh, allfelt that the HCTs were reaching the majority ofPLHA in their communities"I would say that about 80% of the people withAIDS in my community are visited by the home careteams. The ones who miss out are those who live in thevillas (houses occupied by upper-income group)"[Village Governor, Cham Carmon]29 Consensus Workshop on HIV/AIDS in Cambodia, Phnom Penh, 1999pg 31

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia4 COST ANALYSIS4.1BackgroundThis evaluation sought to estimate the costsavings to patients and families receiving homebasedcare. The evaluation also attempted toprovide a comparison of the costs of providinghome care services in the urban and ruralprogrammes in Cambodia. Alternative approachesto providing care to PLHA are being piloted inmany countries, in response to the increasingdemands of the HIV/AIDS epidemic. The effectivenessof these approaches in improving thequality of life for individuals and families and thecost of delivering care services are being evaluatedto assist program planners in understandingthe future range of options of care to offer PLHA.Key difficulties cited in many overview papers 30 , 31on home care include issues of sustainability andconcerns related to cost, quality and coverage ofservices.At present, there have been few estimates ofthe costs of providing home-based care, andthese are generally limited to programmes inAfrica. SAfAIDS reported that the time burden oncare givers imposes the highest cost to thehousehold, where caregivers typically spend 2-3hours per day caring for the ill 32 . In 1993, a WHOstudy in Zambia found that the cost of a 3 personteam home visit was $26 33 .Estimates in 1994 indicate that the cost ofhome care in Zimbabwe ranged from $16 - $23per visit in urban areas and $38 - $42 per visit inrural areas. Further analysis reveals that up to75% of those costs were transportation costs,particularly in rural areas 34 .Gilkes, et al 35 concluded that hospital basedhome care programmes were not cost efficientsince they could not cover all beneficiaries inneed of care services. For example, in Zambia,the cost of the Chikankata Hospital home-basedcare programme in rural areas was estimated tobe about $1000 per client served. Again, themajority of those costs were transportation costs.Community-based programmes have beenfound to be significantly less costly. For theZambia Catholic Diocese Copperbelt homebasedcare programmes the cost of services wereabout $5.50 per beneficiary. The largest item ofexpenditure (39%) for this community-basedprogramme was welfare support for food,blankets, etc. Community-based programmes areassumed to be more cost-effective due to volunteerismand decreased time pressures of teamsproviding care as they are located near thecommunities they serve.As far as we are aware, there is little or noreliable data on the costs of providing homebased care in an Asian country.The analysis provided in the following sectionsoutlines the costs of delivering the home careprogramme described in this report. The analysisalso provides an estimate of household levelcosts and the perceived cost benefits of theprogramme to patients and families.pg 3230 Woelk G et.al. (1997) Do we care? The cost and quality of home based care for HIV/AIDS patients and their communities in Zimbabwe, University ofZimbabwe, SAfAIDS, Ministry of Health & Child Welfare, Harare31 Foster, G et. al. (1999) Increased scope and decreased costs of home care. SAfAIDS News, Vol 7 No.332 Lee, T (1999) Cost and cost-effectiveness of home care: Zimbabwe experience, SAFAIDS33 MoH Zambia/WHO (1994) Cost and impact of home based care for people living with HIV/AIDS in Zambia34 Hansen, K et.al (1998) The cost of home-based care for HIV/AIDS patients in Zimbabwe. AIDS Care, Vol 10, No.6.35 Gilks et. al. 1998 op.cit.

COSTANALYSISMethods and Results 4.2Programme costs were determined by tabulatingall costs associated with the programme since itsinception. In February 1999, at the end ofthe pilot phase, DFID/WHO support to theprogramme ceased, and financial and technicalsupport was provided locally by KHANA, and bytwo INGOs - World Vision and Maryknoll. Thecost analysis provided below focuses on thepost-pilot period from February 1999 - February2000. Programme cost analysis includes all relevantcosts, direct and indirect, for KHANA, theMOH, the two INGOs and the local subgranteeNGOs involved in the programme.One of the main vehicles for disbursingresources to implementing NGOs was via NGOgrants and technical assistance. In Table 1below, the technical assistance costs and NGOgrant (programme) costs are disaggregated todetermine indirect costs for the grantee NGOs.Table 2 provides information on the costs per visitand costs per month per patient served for theurban and rural programmes. The cost per visitand cost per patient are based on available financialdata held by KHANA and the partner NGOs,together with information obtained from in-depthinterviews with programme managers on thelevel of effort of the programme for each of itsprogram objectives. Costs for the urban programmebased on level of effort are shown inTable 3.For the household level income and financialinformation, household surveys were administeredto 100 households participating in thehome care programme to determine the changesin income, financial burdens, and time burdensfaced by households coping with HIV infection.The survey was cross-sectional post-test only. Asmall sample (10) of hospital patients who did notreceive home care services were also surveyedto try to establish an informal comparison.Table 1: Home Care Programme Cost: Post Pilot PhaseUrban Home Care ProgrammeCosts (9.5 teams 35 )Rural Home CareProgramme Costs (1 team)Total Urban andRural:(10.5 teams)Technical Supportand CapacityBuilding$50,739 $6,458 $57,197Total ProgrammeCosts (NGO Grants)PersonnelCommoditiesTransport$100,765 $15,614 $116,379$58,290$32,443$10,032$10,902$3,132$1,580Overhead $31,552 $4,974 $36,526Total $183,056 $27,046 $210,102Average cost perteam per month$1,606 $2,254 $1,667TS and Capacity Building: group workshops and individual technical and organisational support visits, includingpercentage salaries of technical staff from the 2 INGOs; 5 LNGOs (including Khana) and NCHADSProgramme Costs: Personnel - Home Care Staff and Volunteers. Commodities - medicines and other materials in the Home CareKits; patient welfare support; mobile telephone charges; stationery; support group costs and refreshments for community meetings.Transport - transportation for HCT staff for home care activities.Overheads: percentage costs of INGO, LNGO, NCHADS and MoH rent, utilities, equipment, administration and non-technical staff.pg 3335 The tenth team in Phnom Penh has only been operating for 6 months, so costs were pro-rated

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaTable 2: Home Care Programme Cost: Urban and Rural AreasUrban (Phnom Penh)Rural (Battambang)Programme costs (over 9.5 teams) $183,056 (1 team) $27,046Time period costed 12 months 12 monthsNumber of teams 9.51Visits (average perteam per month)Patients (average perteam per month)1736315460Average cost perteam per monthAverage cost perpatient per monthAverage costper visit$1,606 $2,254$25.50 $37.60$9.28 $14.60Per visit cost ofpatient-related activities$6.58$10.39Per visit cost of addressinghealth needs of patient$3.71 $5.86Table 3: Urban Home Care Programme Cost by Programme ObjectiveProject ObjectiveImprove Physical WellBeing of PatientsImprove Emotional WellBeing of patients andfamiliesImprove Social WellBeing of Patients andFamiliesImprove Educational WellBeing of Patients andFamiliesTotal cost of patientrelatedactivitiesNon Patient Activity -Liaison with CommunityLeaders, etcImprove local NGOCapacity% Level of Effort Average Cost perVisit (Urban)Average Cost per Patientper month (Urban)40% $3.71 $10.2015% $1.39 $3.828% $0.74 $2.048% $0.74 $2.0471% $6.58 $18.1115% $1.39 $3.8310% $0.93 $2.55Improve MOH Capacity 4% $0.37 $1.02pg 34TOTAL 100% $9.28 $25.50

COSTANALYSISCost Implications for Households4.3At the household level, families were asked questionsabout changes in household income andtime available as a result of illness and care givingto PLHA. One hundred questionnaires wereadministered, with a 98% response rate for questionsrelated to income and financial savings dueto the home care programme. Of those whoresponded, all households stated that there was adecrease in earnings due to illness in the household,generally because the patient was lessable/unable to work to earn income. The change inhousehold income due to illness was reported tobe from $7.90 - 10.53 per week. Of the non-homecareparticipants who were interviewed in hospital,the reported range of decreased earnings was $10- $20 per week.When asked specifically if households visitedby home care teams saved money on health care,98% of respondents stated that they savedmoney, with a range of savings from $0.80 - $1.30per week.Of those respondents receiving home carewho still use traditional healers, the range of financialsavings due to decreased and/or more appropriateuse ranged from $5.30 to $10.50 per week.In addition to financial savings, respondentswere asked about time savings due to the homecare programme. 99% of respondents stated thatthey have more time available to them since theybegan receiving visits. The average range of timesaved was reported to be from 3 -4 days permonth.Providing care to PLHA can be a major burdenon the household. 81% of respondents statedthat they had care givers assisting them with theirneeds. Of the care-givers surveyed, 73% ofthose who care for PLHA stated that theirincomes have decreased because of this duty.The range of financial decreases due to having toprovide care was $0.79 - $1.05 per week. Ofthose who were not participating in the home careprogramme, 40% of caregivers reported a weeklydecrease in earnings, ranging from $5 - $15. Interms of time savings, 100% of caregivers interviewedstated that the home careprogramme assisted by decreasing the timeneeded by the household to access medicationsand health facilities.The home care programme also providesresources to households in need of welfare interventionssuch as food, transportation to healthcentre, etc. Figures 3 and 4 below indicate thewelfare support provided by the urban and therural programmes, based on household need. Itis clear that the need for nutritionally appropriatefood and for transport costs were the highestdemands for resources among householdsreceiving home-based care services.Figure 3Welfare Support to Patients(Phnom Penh)House repairs3%Labs 0.3%Transport home 4%Funeral 7%Hosp chgs 8%Food 54%Transport to hosp 24%pg 35

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaFigure 4Patient Support -BattambangHosp charges 0.3%Labs 0%Transport to hospital 4%Transprt home 4%Food 42%Hse repairs 24%Funeral 25%4.4Analysis and Conclusions4.4.1 Cost and time savings to households4.4.2 Programme costsIt is clear that the home care programme hasprovided households with significant benefits interms of financial and time savings. The savingsexpressed by households participating in theprogramme are primarily due to changes in useof traditional healers and in the use of medicinesprovided by the HCTs.The needs of households for basic foodand resources was apparent in the use ofwelfare resources provided by the HCTs.Based on these needs it is clear that, for boththe urban and the rural programme, in additionto basic medical care services, basicnutritional andwelfare support is needed byhouseholds with PLHA. In the rural area,funeral expenses are also placing pressure onfamily expenditures as evidenced by the needfor welfare for funeral costs.In terms of programme costs, the cost ofdelivering services by the home careprogramme in Cambodia compares favourablywith the cost of providing outpatient services.Given that the home care programme hasmultiple outputs, many of which result in benefitsbeyond improving the physical well-being ofpatients, it is important to try to associateprogramme costs with the appropriate outputs,based on level of effort. Table 3 highlights therelative levels of effort for each programmeoutput and their resultant costs per visit andper patient.This approach in associating programmeoutputs with cost per visit and cost per patientbased on levels of effort is one way to beginappropriate cross-programme comparisons.Bunna & Myers 36 in 1999 estimated the costs ofaccessing out patient health care in Cambodiaas $15 per patient episode. This estimate wasderived from data provided by a 1998 Ministrypg 3636 Bunna S and Myers CN "Estimated Economic Costs of AIDS in Cambodia", UNDP, 199937 Ministry of Health 1998, "The demand for health care in Cambodia: Concepts for future research", National Public Health and Research Institute.

COSTANALYSISof Health study 37 on the demand for health carein Cambodia. This study notes that for anepisode of illness, the majority of people boughtmedicine as their first course of action and theaverage amount paid was $4.65. Of those whochose hospital as the first course of action, theaverage amount paid for an initial visit was$17.30. Of those who bought medicine and continuedseeking treatment, the most commoncourse of action was going to hospital.On average, respondents in the 1998 MoHstudy estimated paying $7.30 for the firstcontact with any health care provider. For thosewho continued to seek care for the sameepisode of illness, the second contact wasestimated to cost on average $11.15, and thethird, $12.69.Based on these responses, the rate of returnwas estimated to be 1.7. This indicates that whenill, a person seeks health care an average of 1.7times for the same episode of illness. Applyingthe average costs, Bunna & Myers estimated thatone episode of illness costs about $15.It should be emphasised that these figuresrefer to costs to the patient and not costs to theprovider, so comparisons with the cost of homecare provision should be treated with extremecaution.The evaluation attempted to respondpositively to the considerable, and perhapsdisproportionate, interest in the cost of a homecare visit in Cambodia. This estimate wasachieved by compiling all related costs over thepast 12 months incurred in implementing theprogramme and providing technical assistance.Line items for salaries include an appropriatepercentage of salaries of technical staff from the2 INGOs; 5 LNGOs (including KHANA) andNCHADS. Technical Support and CapacityBuilding costs included group workshops andindividual technical and organisational support.Programme Costs include personnel (Home CareStaff and Volunteers). Costs of commoditiesinclude medicines and other materials in the HomeCare Kits, patient welfare support, mobile telephonecharges, stationery, support group costsand refreshments for community meetings.Transport costs reflected transportation for HCTstaff for home care activities and visits. Overheadsinclude a percentage of costs of INGO, LNGO,NCHADS and MoH rent, utilities, equipment,administration and non-technical staff.The total cost figure was averaged over thepast 12 months and divided by the number ofteams (one of the urban HCTs only operated forhalf a year, hence there was 9.5 teams in theurban programme) to give an average cost permonth per team of $1606 for the urbanprogramme and $2254 for the rural programme.These figures were divided by the averagenumber of home care visits per team per monthfor each of the 2 programmes, yielding anaverage cost per visit of $9.28 in Phnom Penhand $14.60 per visit in Battambang.In making comparisons with the cost ofoutpatient services at hospitals, it should benoted that the home care figures include thecosts of improving the emotional, educationaland social well-being of the patient (in additionto improvements in physical well-being). Theyalso include the costs of prevention and liaisonactivities in the community and the costs ofbuilding capacity of MoH and NGO partners inthe programme.A more realistic comparison with hospitalout-patient treatment is provided by the costassociated with addressing the health needsof the patient using home-based care, whichis estimated (based on level of effort) as$3.71 per visit.pg 37

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaGiven that the home care programme hasmany more benefits than just those related to thehealth of the patient, it is clear that whencomparing costs against comparable objectives,the home care programme is significantly lessexpensive. Home care may be able to providemore services to patients while facility-basedcare may be able to provide the same service tomore patients. This difference in programmeapproaches is important to note so costcomparisons can be applied more objectively.4.4.3 Urban / rural cost comparisonswill decrease as service delivery increases as aresult of marginal changes with additionalclients. Issues related to the rural programmeare explored further in section 6 of this report. Itshould be noted that "rural programme"straddles a national highway (between PhnomPenh and Battambang). The programmeenvironment should not therefore be construedas representing the realities of programming inmost of rural Cambodia.4.4.4 Cost comparisons with otherhome care programmesThe evaluation revealed that the cost ofproviding rural home care services is significantly(58%) higher than providing comparableservices in Phnom Penh. The distribution ofcosts suggest that the need for technical supportand the distance to deliver that support canrequire more resources in rural areas than inurban areas, especially in the initial phases ofprogram start-up. It is assumed that these costsThe evaluation reveals that the cost of thehome care programme in Cambodia comparesfavourably with other community-basedprogrammes and is significantly less expensivethan facility-based programmes in otherdeveloping countries. Table 4 outlines availablecosts of (the limited number of) other home careprogrammes with cost assessments, comparedwith the Cambodia programme.Table 4: Cost of Home Care in Developing CountriesCountryCost per Visit(Urban)Cost per Visit(Rural)Cost per Client(Health FacilityBased (OPD /Home Care)Cost per Client(Community-Based HomeCare)Time Spent orTime SavedZimbabwe $16 -$23 $38-$42 2-3hours perday spent forcaregiving11-25 hours perweekZambia$26$1000$5.50Cambodia $9.28$3.71 foraddressinghealth needs$14.64 $15 $10.20 forphysicalhealth$25.50 for fullhome careserviceTime Saved:3-4 days permonthpg 38

COSTANALYSISLimitations of the Cost Analysis 4.5Without knowing the specific methods of costanalysis in other evaluations, it is difficult toprovide meaningful cost comparisons acrossstudies and settings. While illustrative comparisonsare provided in this evaluation, it isdifficult to assess the appropriateness of thesecomparisons as the methods of cost datacollection and analysis are either unclear orslightly different in the referenced studies.There were limitations in tabulating cost data inthis evaluation, due to the retrospective natureof the data collection. We were not able todetermine the exact expenditures per objectivein the retrospective design and the costper objective figures are estimated via keyinformant interviews.pg 39

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5 INPUTS AND PROCESS5.1 The Home Care NetworkThe Home Care Network in Phnom Penh (illustratedin Appendix ll) now consists of 10 HomeCare Teams (HCTs), of which seven receivefinancial and technical support from KHANAand three from World Vision. The sevenKhana-supported teams are managed by 5different locals NGOs. The Home Care Networkis co-ordinated through the AIDS Care Unit ofNCHADS.Until March 2000 KHANA supported 2 teamsthrough the MSF-supported CUHCA clinic, butfollowing the closure of CUHCA, the teamsthemselves have formed their own local NGO,KOSHER, which KHANA is also nowsupporting. Maryknoll, an international NGOwas supporting one team, but following a shiftin January 2000 in their focus of activities,Maryknoll handed over the support of their teamto WOMEN, a local NGO who were alreadyreceiving KHANA support.The ability of WOMEN to expand the numberof teams they manage, and the successfulformation of KOSHER to manage 2 HCTs, areboth indicators of improved local capacitywithin the Home Care Network, as directoutcomes of technical support provided byKHANA to the programme.The teams are located at 9 Municipal HealthCentres spread throughout the city. The healthcentres were selected by the Municipal HealthDepartment, based on location, capacity anddegree of commitment of support from theHealth Centre Managers.Monitoring of home care provision isconducted by a committee, representingNCHADS, MHD, KHANA, Health CentreManagers and the 6 participating NGOs, towhom the HCTs submit monthly reports. Thesereports are compiled by the Home Care NetworkCo-ordinator at NCHADS and reviewed atmonthly meetings of what is presently called the"Project Committee". It is recommended thatthis is renamed the "Home-Care NetworkGroup" (HCNG), to better reflect its function andthe status of the programme. This term will beused in the remainder of the report.During the pilot phase the HCNG wasco-ordinated by the Project Co-ordinator, basedat WHO. From February 1999, this responsibilitywas taken up by the Home Care NetworkCo-ordinator at NCHADS, with financial andtechnical support from KHANA.5.1.1 Home Care Network Group MeetingsThe evaluation team reviewed minutes of theHCNG Meetings (presently called ProjectCommittee Meetings) for the past 12 months. Inaddition, members of the evaluation teamparticipated in three HCNG Meetings during thecourse of the evaluation. It is appropriate for thisevaluation to acknowledge and highlight thetremendous amount of professional commitment,time and effort put into these meetings bythe members of the HCNG. As well as reviewingpg 40

INPUTSAND PROCESSthe monthly HCT reports, participants at themeetings discuss ongoing and emerging issues,mostly raised by the HCTs, related to homecare provision. The HCTs are represented atthe meetings by the Home Care NetworkCo-ordinator who also chairs the meetings.The evaluation team strongly concurs withboth the HCNG and the HCTs themselves,that the HCNG Meetings are an essentialcomponent of the home care programme. Themeetings serve a number of functions:• they provide a feedback and support mechanismfor sharing and addressing ongoingand emerging problems faced by the HomeCare Teams. In the 3 meetings attendedduring the evaluation, the emerging problemsof safe abortion for HIV+ mothers, andmanagement of orphaned children wereraised.• they provide a communication mechanismbetween NCHADS, MHD, NGOs and theHCTs, for programme developments andinnovations. Proposed developments includethe use of Bactrim for prophylaxis and theestablishment of closer linkages with theNational TB Programme's DOTS team.• they provide an overview and facilitate theco-ordination of home care activities withinPhnom Penh, and elsewhere in CambodiaLesson learned: Home Care Network GroupMeetings provide feedback, co-ordinationand support to the HCTs and are animportant component of the home careprogramme.As the Home Care programme expands tomeet the increasing demands for care and support,it is clear that a mechanism will be neededto plan for the expansion, co-ordinate activitiesand monitor outcomes. The Home CareNetwork Group is ideally placed to fulfil this role.In addition to continuing to provide feedbackand support to the HCTs the Home CareNetwork Group will need to expand its role toprovide a mechanism for:• democratic planning and co-ordinatinggovernment and NGO partnerships• assessing skills development needsand co-ordinating technical supportand training• strengthening links with other componentsof the referral network, including VoluntaryCounselling & Testing, contraceptive services,STI services and TB services• monitoring inputs, process, outcomes andimpact.Because of the important links betweenHIV/AIDS and TB, it is recommended that TheNational TB Hospital should be included in the listof collaborating institutions of the Home CareNetwork. It is further recommended that a representativefrom the Home Care Network Group isinvited to be on the HIV/TB working group that ischaired by NCHADS.It is recommended that CENAT is includedin the list of collaborating institutions ofthe Home Care Networkpg 41

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaIt is recommended that a representativefrom the Home Care Network Group is invitedto be on the HIV/TB working groupchaired by NCHADSThe evaluation strongly recommends thatorganisations wishing to provide home-basedcare should be federated to the Home CareNetwork. This will go some way to ensuringquality, avoiding duplication of effort, facilitatingco-ordination of activities and monitoring overallimpact of home care provision.It is recommended that organisationswishing to provide home-based care are federatedto the Home Care Network.uation notes that, whilst NCHADS has done anexcellent job in co-ordinating the Home CareNetwork, from an institutional perspective thisresponsibility should lie with the MunicipalHealth Department (MHD).As the Home Care Teams are located in theMHD Health Centres, and given the expandedcapacity of the MHD, the evaluation recommendsthat the Municipal AIDS Office would bea more appropriate institutional home for theHome Care Network Group. This relocationwould be in line with ongoing Health Sectorreforms and would enable the present HomeCare Network Co-ordinator at NCHADS todevote more time to issues related to programmeexpansion.pg 42In order to help the Home Care NetworkGroup to begin to meet the increasing demandsof expanding home care provision, the evaluationteam recommends that the existing HomeCare Network should be strengthened andinstitutionalised. However, there are dangersinherent in "over-institutionalising" the Network,perhaps by making it into a public sectorcommittee. It is vital that the Home CareNetwork remains a responsive feedback,support, planning and co-ordination mechanism,as opposed to a bureaucracy.It is recommended that the Home CareNetwork is strengthened and institutionalised.5.1.2 Institutional base for the HomeCare Network GroupBecause of the previous limited resourceswithin the Municipal Health Department, theHCNG meetings have been held at NCHADS,and chaired by the Home Care Network Coordinator,who is also from NCHADS. The eval-It is recommended that the MunicipalAIDS Office begins to assume responsibilityfor co-ordinating the Home Care Network inPhnom Penh.5.1.3 Resourcing the Home CareNetwork GroupSupport to the Home Care Network Groupitself is presently limited to salary and administrativesupport, provided by KHANA, to theHome Care Network Co-ordinator. The HCNGitself has no independent funds, and its ability toexpand its role is therefore constrained.In keeping with the recommendation tostrengthen the Home Care Network, it is furtherrecommended that the Home Care NetworkGroup should become an autonomous unit,with its own resources and financial support.It is recommended that the Home CareNetwork Group becomes an autonomousunit, with its own resources and financialsupport

INPUTSAND PROCESSIn recommending that the HCNG becomesautonomous, it is important to acknowledge thekey factors which contribute to its current effectiveness.Although the Network is co-ordinatedfrom NCHADS, it retains external financial andtechnical assistance - originally from WHO, andsince 1999 from KHANA. In moving the institutionalbase of the Home Care Network Group,as well as expanding its role, it will be importantto ensure that this assistance not only continues,but is enhanced.In the light of the proven track record ofKHANA, and the experience of the home careprogramme of KHANA's current TechnicalAdvisor, it is suggested that KHANA isapproached to provide financial and technicalsupport for an initial period of 6 months. It issuggested that funds would include salary andadministrative support to the Home CareNetwork Co-ordinator, as is presently the case,together with additional resources to enable theHome Care Network Group to establish an independentidentity. Technical support should bemade available, initially to assist the transitionfrom NCHADS to the Municipal Aids Office, andthen to build the capacity of the Home CareNetwork Group as a democratic planning andimplementing partnership of NGO and governmentrepresentatives.It is recommended that KHANA isapproached to provide technical and financialsupport to facilitate the expansion andrelocation of the Phnom Penh Home CareNetwork GroupGiven the important co-ordination rolepresently performed by the Home Care Networkin Phnom Penh, the evaluation further recommendsthe establishment of Provincial HomeCare Networks to co-ordinate the expansion ofhome care activities in the provinces. A keyfunction of the Phnom Penh HCNG would thenbe to build the capacity of future ProvincialHome Care Networks.It is recommended NCHADS considersestablishing Provincial Home Care Networksto co-ordinate the expansion of home careactivities to the provinces.Home Care Team Formation 5.2Each home care team consists of 3 full-timeNGO staff and 2 half-time government staff fromthe health centre. At the inception of the Pilotprogramme, both the NGOs and the health centreswere asked to select interested staff members,who were then interviewed by a panelmade up of representatives from the programmepartners. A rating system was used toassess the interviewees' knowledge and attitudestowards PLHA, as well as their backgrounds.The 40 staff (initially there were 8teams of 5), who were selected on merit, thendiscussed and signed an Agreement of Rolesand Responsibilities.A small proportion of those who were selectedwere subsequently found to be unsuitable,and left the HCTs. Of the 40 staff originallyselected, 35 are still working in the HCTs.The home care staff, as well as the membersof the Home Care Network Group have emphasisedduring this evaluation that the selection ofthe right staff for the home care teams is criticalpg 43

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiato the success of the programme. The right setof attitudes of the team members towards PLHA(understanding, empathic, supportive, nonjudgemental),is felt to be particularly important.Lesson learned: a competitive selectionprocedure for HCTs to ensure the right staffwith the right set of attitudes towards PLHAis important to ensure quality home careprovisionwas also felt that promoting good team spiritand collaboration from the beginning wouldhelp provide a support mechanism to alleviatethe stresses which often arise in palliative caresituations. Generally, staff from the same NGOstayed together in a team, but there was somemixing to achieve a good balance of skills,experience and gender within a team. This wasnecessary to meet the diverse needs of thehome care programme.Following selection, the first two weeks oftraining were largely devoted to team-building.This was partly to promote better understandingof the different strengths of NGO and MoHapproaches to healthcare and development. ItLesson learned: achieving the right balanceof skills, experience and gender withina team and fostering team support andcollaboration are important inputs in settingup the home care programme5.3 Training and Resourcespg 44For the initial home care training, the teamswere divided into 2 mixed groups of 20. It wasconducted in 3 one-week modules with thesecond week comprising a placement with anexisting community health project.The training course was facilitated by a nursetrainerfrom the MoH Master Trainer Programme.The trainers, who were drawn from a wide rangeof institutions, were encouraged to useparticipatory techniques including case studiesand roles plays as much as possible. The coursecontained modules on counselling, models ofAIDS care, HIV/AIDS education for families,voluntary counselling & testing (VCT), homenursing care, hygiene, nutrition, use of drugs,managing symptoms, psychological problems,pain management,TB, traditional medicine,HIV/AIDS & children, working with volunteers,working with the community, and palliative care.The lesson plans, handouts and summarieswere compiled into a draft training pack inKhmer which is available at the AIDS Care Unitof NCHADS.A participatory evaluation of the trainingcourse conducted immediately afterwardsindicated a high degree of satisfaction bycourse participants in preparing them for theirroles in the HCTs.The consensus of HCT members interviewedduring this evaluation, was that theinitial training provided during start-up wasessential preparation for their work in the homecare programme.Lesson learned: comprehensive training forthe HCTs, using participatory approacheswhere appropriate, is essential preparationfor initiating a home care programme

INPUTSAND PROCESSIt is recommended that the draft trainingpack used in initial training is updated anddeveloped into a training resource packfor use when the home care programmeis expanded.A heavily adapted Khmer version of WHO's"Handbook on AIDS Home Care" was one ofthe resources used during the training. Thiscontinues to be the main resource for the homecare programme, with a copy being provided toeach home care team member. Originally developedby NGOs in Africa, the handbook showsprimary health workers how to manage symptomsin the home and how to use stories toteach about the realities of HIV/AIDS. The handbookhas been extensively field tested and5,000 copies have been printed by WHO for distributionby NCHADS. Because of the usefulnessof this resource, it is recommended thatthe Handbook is re-translated into English and1000 copies are printed for distribution to IOsand NGOs working in the field of AIDS Care. Itis also recommended that the pictures from the"Home Care Stories" are incorporated into aflipchart for teaching purposes.It is recommended that the AIDS CareHandbook is translated into English and 1000copies are printed for distribution toNGOs/IOsIt is recommended that pictures fromHome Care Stories are incorporated into aflipchart for teaching purposes by organisationsworking in the field of AIDS care.In response to training needs identifiedduring participatory reviews, KHANA and WorldVision have supported and/or facilitated a seriesof further orientations and refresher training.During September 1998 all HCT membersunderwent a 1-week placement in local hospitalsand/or hospices to upgrade their diagnosticand treatment skills. The HCTs also hostedsocial workers from Social Services Cambodiato help improve their knowledge of HIV/AIDS.In October and November 1999, withsupport from KHANA, all local NGO andgovernment team members attended a 1-weekbasic counselling course. In addition, one NGOmember and one government member of eachteam attended a 2-week post basic counsellingcourse run by Quaker Services Australia(QSA) on contract from KHANA. KHANA hasalso contracted QSA to facilitate monthlycounselling follow-up sessions with teammembers, where case studies are presentedand discussed.In the last quarter of 1999, KHANA ran ashort course for HCTs in AppropriatePrescribing and contracted Douleurs sansFrontières to conduct a course for HCTs inPhysiotherapy for Pain Relief.The evaluation noted that these on-goingtraining updates and orientations are helping theHCTs to provide a more professional service.However, a number of HCT staff still express adesire for further training. The team membersperceived that their main skills/knowledge gapswere in clinical diagnosis and management ofsymptoms, in the appropriate use of pharmaceuticalproducts, and in counselling.In the light of recent and ongoing training,the evaluation team are of the opinion that furthercounselling training is not a high priority.Indeed, in the 17 observations of home careteams at work, the evaluation team were particularlyimpressed with the counselling skills ofthe home care staff, and noted that these wereamong some of the best they had observedin Cambodia.pg 45

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaIt is believed however, that there is a case forupgrading skills in clinical diagnosis of commonconditions related to HIV/AIDS. It is to thecredit of the home care team staff that theyrecognise the need for better diagnostic skills,especially in a country where the prevailingmedical ethos does not encourage sharingdiagnosis with patients, and where selfprescriptionand treatment without diagnosisis common.It is also felt that HCT staff should continueto receive ongoing refresher training in treatmentregimes to enable them to deal with issuesand answer questions from patients aboutmedication, side effects, etc. A case studyapproach could be used to address individualissues as they arise.It is evident that, with the increase in theAIDS epidemic and the widening profiles ofPLHA, the HCTs will continue to face new issuesand challenges. One issue which emergedduring this evaluation is the increasing numberof pregnant women who are HIV+ and who donot wish to continue the pregnancy. A secondchallenge, which is becoming increasinglyprevalent, is the number of children, many ofwhom are themselves HIV+, who have become,or who will soon become orphaned because ofAIDS-related deaths.It is recommended that the Home CareNetwork assumes responsibility for establishingand implementing a system of ongoing refreshertraining and orientations to deal with theseemerging issues. Some training can beconducted on-the-job, while other issues canbe dealt with during short workshops. It isbelieved that the Home Care Network can drawon existing skills and resources available inCambodia, and it is suggested that KHANA,MoH, NGOs, and other ministries could play amajor role in resourcing this.It is recommended that the Home CareNetwork implements a schedule of ongoingrefresher training and orientations to dealwith emerging issues facing HCTs. KHANA,MoH, NGOs and other ministries could act asresources with funding and support throughthe Home Care Network.5.4 Home Care ActivitiesObservations and interviews conducted duringthis evaluation confirmed findings from a previousreview, that approximately 80% of the HCT'stime is spent in contact with patients and families,including local travel to visit the patients.The remaining 20% of the time of the HCTs isspent on activities which are not directly relatedto patients. These activities include liaison withcommunity leaders, monks, health centres andhospitals, participating in NGO and homecareteam meetings, community-based IEC activities,identifying and establishing links with othercommunity-based initiatives, etc.The majority of the patient contact time takesplace in the patient's own living environment.Sometimes this is a permanent dwelling, but sincethe majority of the home care patients are extremelypoor, the living environment is often a squattersettlement, a temporary shelter or a tarpaulin.Occasionally, patients visit the team at the healthcentre, and sometimes team members accompanypatients to hospitals or testing centres.pg 46

INPUTSAND PROCESSEach HCT splits into two groups of 2 staff,and patients are visited by one of the groups anaverage of 3 times per month. The contact timewith patients and families is devoted to providingthe four main components of home care:• Clinical Management to improve thephysical well-being of patients. Thisincludes taking patients to hospital andtesting centres, providing rational treatmentof HIV-related illnesses using thehome care kit, where appropriate, andproviding follow-up care.• Nursing Care and health education topatients and care-givers to promote andmaintain hygiene, nutrition and infectioncontrol, and providing palliative andterminal care to PLHA• Counselling, including psychosocialsupport to PLHA and their families, toimprove the emotional well being ofpatients and families by reducing stressand anxiety and promoting positiveliving and risk reduction strategies• Social Support, including materialassistance, providing education &information, strengthening links withthe community, and referral to supportgroups and services in order to improvethe social well-being of patients andfamilies.Monthly Visits - Phnom PenhFigure 5pg 47

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaEach patient receives an average of three fullhome-care visits each month, with the actualnumber of visits, duration and activitiesperformed being determined by the teamaccording to the patient's needs. In addition,because the geographical areas in which theywork are generally small, the HCT will often just"look in" on patients as they pass their homes 38 .Most patients are generally visited in this way atleast once per week. Of the 100 patients interviewedduring the evaluation, 98% said theywere visited at least once per week and 84% saidthey were visited at least twice per week by theHCTs. Eighty eight per cent were happy with thefrequency of visits they received, 11% wantedmore visits, and 1% wanted less.Given the present human resource capacityof the HCTs, maintaining the current number ofvisits places severe limitations on the number ofpatients who can be visited by the teams.Reviews with the teams indicate that 80 patientsper team is a practical upper limit to their capacity,and most teams are now working at, or nearto this limit.Following the review of the project last year,checklists were developed for different types ofhome visits, although the evaluation team did notobserve these being used systematically.In a typical "maintenance" visit, lastingapproximately 20 minutes, the team reviews thephysical, educational and emotional status of thepatient and family, prescribes medication whereappropriate from the Home Care Kit (see Fig. 6),shows the patient and primary caregiver (if present)how to provide simple relief of symptoms,reinforces proper understanding of HIV/AIDSincluding prevention, and provides food and asmall amount of money, where necessary, fortransport to hospital and other material needs.There are some emerging issues related tothe provision of money by the HCTs to PLHA. Atthe onset of the project, the aim was to onlyprovide small amounts of money against specificcriteria, e.g. for transport to hospital, orin cases of destitution. While some HCTs stillfollow this approach, others provide a fixed sum(around $0.30) to every patient on each visit. Itcould be argued that the majority of PLHA visitedby the HCTs are poor and vulnerable, and theprovision of small sums of money is a majorfactor in maintaining the quality of life ofpatients and families. Furthermore, an increasingpercentage of patients visited are women,who are likely to be more vulnerable and in needof financial support.However, there is a risk that routinely providingmoney to PLHA is fostering financialdependency, with the HCT acting as a financialsupport service. It is therefore recommendedthat the HCTs return to the original remit of providingfood and materials, but only providingmoney against specific criteria. These criteriashould be agreed within the Home CareNetwork so they are consistent across teams.It is recommended that HCTs should onlyprovide money to PLHA against specificcriteria which are agreed in consultation withthe Home Care NetworkThe 100 patients interviewed in Phnom Penhduring the evaluation were asked, in an openresponsequestion, what are the most importantthings about home care visits. 34% mentionedmoney, 13% mentioned transport, 5% mentionedfood and 9% mentioned other materials. Far moreimportant in patients' perceptions however, wasthe provision of medicine (mentioned by 58%),pg 4838 In determining the average cost per visit, (see section 6.2) only the full home care visits were taken into account.Short encounters and social visits were not counted.

INPUTSAND PROCESSand the feeling provided by the visits of beingcared for and not being isolated (30%), andthe encouragement and hope provided bycounselling (40%). 11% mentioned educationabout HIV/AIDS and the importance of goodhygiene and nutrition as being amongthe most important things about the homecare visits.Participant observations of home carevisits, and focus group discussions with theHCTs revealed that there is a fairly standardset of activities performed by the teams relatedto clinical management, nursing care andcounselling. However, there is an increasingdiversity, both within and across the teams, inactivities related to social support andnon-patient-related activities.Examples of social support activitiesinclude establishing and maintaining supportgroups for PLHA, providing food and money,helping patients to find accommodation andwork, shopping and cooking for bedriddenpatients, doing simple house repairs, referringpatients to other medical services.Examples of activities not directly relatedto patients include liasing with local authorities,religious leaders, community organisations,traditional healers, testing centres,hospitals and health centres, conductingcommunity-based IEC sessions on HIV/AIDS,providing condoms and education to sexworkers, finding homes for orphaned children,visiting families of deceased patients, organisingand attending funerals.The above lists of activities, which are notexhaustive, are provided to illustrate the existing,and increasing, responsibilities beingundertaken by the home care teams, in additionto meeting ongoing needs of patients andfamilies for effective clinical management,nursing care and counselling. There is clearlya limit to which the home care teams cancontinue to meet the increasing expectationsof clients, particularly in view of the increasingclient load as the epidemic expands.It is recommended that the HCNGincludes a module on "Managing ClientExpectations" as part of the ongoing counsellingtraining provided to HCTs.As many of the home care teams are nowworking at their maximum recommendedclient load of 80 patients per team, there is aneed to rationalise the way in which the teamsoperate. One solution may lie in expanding theinvolvement of volunteers in the programme,while another possible approach may be toimprove linkages with social support organisations.These approaches will be exploredfurther in sections 5.10 and 5.11of this report.There is also perhaps a need to re-examinethe balance between the four components ofhome care provision, and to revisit one of theprimary roles of the HCTs which is supportingthe family to address their welfare problemsrather than solving their problems for them. Itis recommended that the Home Care NetworkGroup initiates a review process, in which theroles and responsibilities of the Home CareTeams are re-examined and rationalised, andstrategic priorities are agreed.It is recommended that the HCNG initiatesa review process to clarify and agreestrategic priorities for home care activitiesand to rationalise the roles and responsibilitiesof the Home Care Teams.pg 49

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5.5 Home Care KitThe major resource for clinical managementof symptoms and opportunistic infections is theHome Care Kit (see figure 6 below, and thephotograph on page 16).Figure 6Home Care KitParacetamol 500mgPotassium Permanganate10mg sachets10% Iodine Solution 30ml vialsBenzyl Benzoate 30mlGentian Violet 15ml vialsNystatin Suspension 25mlLoperamidePrimperanPromethazine 100mlMultivitamin TabsOral Rehydration SaltsBicarbonate of Soda500mg TabsMenthol BalmCoconut OilGlovesBandagesScissorsCotton WoolPlastic BagsElastic BandsClothsSoap PowderHousehold BleachHydrogen Peroxide30ml vialsMatchesTweezersPlastersMicropore TapeSafety PinsTalcum PowderCondomspg 50Each team has 2 kits so they can divide intotwo groups for home care visits. The health centrenurses are responsible for the upkeep of thekits and for recording the items used. The HCTCo-ordinators report when the stocks are lowand replacement items, which are funded byKHANA through NGO grants, are distributedthrough NCHADS by the Home Care NetworkCo-ordinator.Because Home-based Care Activities arenot part of the minimum package of activities(MPA) of the MoH, there is no agreement withMoH Central Medical Stores to provide medicinesand other items. At present, supplies forthe kits are purchased in bulk from localpharmacies by the Home Care Co-ordinator,with money provided by the NGO grants. Thequality and availability of these supplies varies

INPUTSAND PROCESSconsiderably, and the HCTs often complain ofshortages and poor quality. Some HealthCentres make up this shortfall when they havesurplus supplies, but this cannot be relied upon.It is recommended that MoH furtherintegrates the Home Care programme intoprocurement plans so that Central MedicalStores are able to resource the drugs for thehome care kits through the Health Centres. Thiswould be a phased process which would initiallyinvolve the MoH including the drugs in the kits inthe essential drugs list. The cost of Home Care Kitsupplies for each team is approximately $30per month. This includes items not available atCMS, such as soap, cloths, etc. which wouldcontinue to be provided through the NGO'sprogramme grants.It is recommended that MoH includesdrugs used in Home Care Kits in the essentialdrugs list.It is recommended that Central MedicalStores initiates steps to provide drugs forHome Care Kits through Health Centres.Many of the home care teams reported thattheir stocks of some medicines (especiallyNystatin, Promethazine, Multivitamins andParacetamol) are depleted long before the endof the month. Part of the reason lies in someteam members responding to the pressure fromnon-home-care clients, who they encounter inthe community, for medicines for pain relief andother minor symptoms. This is justified (bysome teams at least) as enhancing communityco-operation and avoiding discriminationagainst AIDS patients.However, observations of home visits indicatedthat prescribing medicines by the teamsto patients was not always rational, and thatthere was sometimes a tendency to hand out astandard package of medication withoutadequate diagnosis. Whilst it should be notedthat such practise is widespread in Cambodianhealth services, the evaluation team feels thatthis could be helped by more frequent and moresupportive medical supervision. The issue ofsupervision will be addressed in section 4.9 ofthis report.It is recommended that the HCNG reviewsthe criteria and rationalises the process ofprescribing medicines to patients.There is one further issue related to medication,which is pertinent to raise at this juncture.Recent research in Africa, supported by WHOand UNAIDS, has endorsed the regular use ofcotrimoxazole (marketed as Bactrim) for prophylaxisfor PLHA. The recommendation is thatprophylaxis should be given life long for HIV+adults and children, supported by a package ofeducation, monitoring and follow up.Recently, three of the HCTs have been trialingthe provision of Bactrim for PLHA, under thesupervision of the medical co-ordinator. Thisevaluation wholeheartedly supports this initiative,and recommends that Bactrim is providedby all the HCTs to all PLHA, supported by anappropriate package of training for the HCTs,and education, monitoring and follow-up forthe patients. During the preparation of thisreport, MSF were approached to provideBactrim to the HCTs.It is recommended that the Home CareNetwork Group reviews the criteria for homecare provision of Bactrim to HIV patientsin Cambodia, ensuring that there are clearguidelines for selection and monitoringof patients.pg 51

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5.6 ReferralsA key component of the continuum of care is afunctional referral system between hospitals,district-level health facilities, VCT and communitysupport structures, including the home careteams themselves. This is necessary to enablePLHA to access the appropriate level of care,according to the stage of their illness, thusavoiding overburdening hospitals with minorailments and ensuring more serious conditionsare treated promptly.Acknowledging the importance of referralsfor PLHA, significant efforts were made during,and subsequent to, the pilot phase to establisha viable referral system within Phnom Penh.Referral forms were developed, and the keystaff at the main hospitals were consulted andbriefed about the referral system.The strategy was that patients would only bereferred by HCTs to hospital when their conditionrequired an intervention which could not beprovided at home. It was anticipated that thehospitals would accept the judgement of theHCTs on the need for admission and wouldfacilitate easy referral.On discharge, patients would be referred bythe hospitals back to the appropriate HCT, withcontinuity of care being maintained through theuse of "yellow cards" containing patient data.Despite concerted efforts by the HCTs andthe HCNG, it appears that this component ofthe referral system is not working effectively.The home care programme has had limited successin institutionalising referrals to and fromhospitals. The evaluation found that only11% of patients were referred by hospitals,compared with 15% the previous year.Furthermore, the HCTs frequently reportproblems encountered when taking patients tothe main referral hospitals, and the patientsthemselves often refuse to go to hospitalbecause of the long waiting times andperceived unwelcome reception from hospitalstaff.Recently, the HCTs reported some difficultiesencountered at Centre of Hope, whenpatients waited all day without being attendedto. It appears that these difficulties arosebecause neither the HCTs nor the patients fullyunderstand the "lottery system" employed byHope for dealing with outpatients. This issueshould easily be resolved through a meetingof HCT Co-ordinators and Hope medical staff.At Calmette Hospital, on more than oneoccasion, staff have refused to accept HIV testresults from approved VCT centres, even whenthe patient was accompanied by the HCT, andhave insisted on the patients being re-tested.It is perhaps unfair to highlight these twoissues, as there have been problems withreferrals to other institutions. It is believed thatinstitutionalising the home care programmemore firmly within MoH will help to resolvethese problems.During the pilot phase, each of the HCTs wasattached to one of the four main referral hospitals(Calmette, Norodom Sihanouk, MunicipalHospital and Centre of Hope), according to geographicallocation. Each hospital designatedcontact staff, who were supposed to know, andbe known by each member of the HCTs. It isstrongly recommended that this system, whichhas long lapsed, is reinstated.pg 52

INPUTSAND PROCESSEach of the referral hospitals should workclosely with their "partner" HCTs to providemedical supervision, and to agree a set of criteriafor admission of a patient, or for the provisionof outpatient treatment. This should help toimprove the diagnostic skills of the HCTs andavoid unnecessary referrals.It is believed that these strategies will help toimprove the referral process and thus fill onemajor gap in the continuum of care.It is recommended that the HCNGstrengthens the hospital referral system byreinstating the system of attaching each ofthe HCTs to one of the main referral hospitalsin Phnom Penh. The designated hospitalwould then assume responsibility for medicalsupervision and facilitate referrals fortheir partner HCTs.On a positive note, the evaluation foundthat the vast majority of referrals of patients tothe HCTs arise from within the community,with an increasing number coming from neighbours(27%), other patients (9%) and communityleaders (5%). Many patients (28%) arefound by the HCTs themselves, generallythrough their volunteers, but also through theweekly meetings where referrals areexchanged between the teams. HealthCentres referred a further 18% of patients.(see figure 7 below).Figure 7Sources of referralNGOs 2%Community leaders 5%HCTs / Volunteers 28%Other patients 9%Hospitals 11%Health Centres 18%Neighbours 27%It is felt that the increasingly high levels ofcommunity-based referrals provides significantindicators of success of the programme. Theseprocess indicators are outlined below:• increased referrals from volunteers indicatesacceptance of the volunteers withinthe community and their successfulinvolvement in the programme• increased referrals from neighbours andother patients indicates reduced discriminationagainst PLHA and increased trustin the HCTs• increased referrals from community leadersindicates support of the programmeand confidence in the HCTs by localauthoritiespg 53

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5.7 Record KeepingIf continuity of care for PLHA is to be maintainedthroughout the illness then it is importantthat a simple but effective system of patientrecords should be established and maintained.From a perspective of providing care, it hasbecome convenient to refer to five stages relatedto HIV infection:• people uninfected, but at risk• asymptomatic HIV+• early HIV disease• severe disease equivalent to AIDS• terminal illnessDuring the pilot phase, a system of recordkeeping using specially designed "yellow cards"was developed. Each patient was assigned acard which was used to collect data on thelocation of the patient, history of the disease,present condition, family situation, and currentmedication. The cards were held by the nearestHCT and were used for referrals when taking apatient for testing or to hospital. The cards alsoprovided a record of the evolving condition ofthe patient and could be used for monitoringprogress and planning appropriate homecare visits.During observations of home care visits, itwas noted that, while some teams continued touse these cards, there was no pattern ofconsistent use in other teams. Given the breakdownin the referral system with hospitals,there is perhaps some justification for discontinuingusing the cards. However, it was alsonoted that the standard of record-keeping wasgenerally uneven and sometimes inadequate.Maintaining good patient records is importantfor client monitoring, prioritising needs,planning visit schedules and structuring thevisits themselves.It is recommended that the Home CareNetwork Group reviews and strengthens thesystem of record keeping, planning andprioritising visits to patients.5.8 Monitoring & Reportingpg 545.8.1 Monitoring inputs and processThe issue of uneven quality of monthly dataon patient numbers and team activities providedby the HCTs to the Home Care NetworkGroup has been described in an earlier sectionof this report (Section 2.6, Methodology:Limitations of the Evaluation).It is recommended that the monthly figuresfor patients, visits and team activities arequality reviewed before each monthly HCNGmeeting, and that the HCTs reach a commonunderstanding with the Home Care NetworkCo-ordinator on the definitions of a home carevisit and a home care patient, for accountingpurposes.

INPUTSAND PROCESSIt is recommended that the Home CareNetwork reviews with the HCTs the system ofmonitoring and reporting patient numbersand team activities.It is beyond the scope of this report to developspecific recommendations on the answers tothese questions. However, the following suggestionsare offered:In addition to numbers of visits and patientnumbers, the monthly team reports also providedata on referrals, deaths, volunteer activities,community contacts, expenditure, etc., all ofwhich are useful for monitoring inputs andprocess.5.8.2 Monitoring impactApart from reviews and evaluations such asthis one, there is no system in place to measurethe impact of the programme on PLHA, families,communities or the health system. It is stronglyrecommended that the HCNG initiates aprocess to establish an impact monitoring systemfor the Home Care programme. Having apilot monitoring system underway in PhnomPenh will provide valuable lessons in establishinga system in the Provinces, where capacityand resources may be more limited.Decisions need to be made on:• what should be monitored (and why)?• what are the most appropriate methods?• who should conduct the monitoring?• Selected Quality of Life (QoL) indicatorswould be most appropriate for measuringimpact on PLHA and their families.Case studies could complement routinesampling of families visited by the HCTs.• At the community level, support groupsand community leaders could be involvedin participatory impact monitoring activities,perhaps using PLA techniques andinvolving volunteers.• At city level, the HCNG would need toliaise with hospitals and health centresto develop appropriate indicators andmethods of verifying the impact of theprogramme.The HCTs have already began a processof identifying indicators, and this will hopefullybe continued during the forthcoming participatorylocal partner reviews in July. However, thedifficulties in establishing even a simple buteffective impact monitoring system should notbe underestimated, and external resources andexpertise in impact monitoring are likely to berequired.• are any special skills required, and if so,who should help develop these skills?• over what scale and timeframe maythe different types of monitoring beappropriate?It is recommended that the HCNG seekstechnical support to facilitate the process ofestablishing an impact monitoring systemfor the Home Care programme, includingdeveloping appropriate indicators.pg 55

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5.9 SupervisionSupervision is provided at two levels in thehome care programme in Phnom Penh. Eachteam has a Team Coordinator for day-to-daysupervision and receives twice-monthly visitsfrom external supervisors. In addition to dailysupervision of their own HCTs, they are alsoresponsible for communicating informationbetween the HCTs and the Home Care NetworkCo-ordinator.The Team Co-ordinators were initiallyselected by the Project committee, but are nowelected by their own teams.At the start of the pilot project, two medicaldoctors visited the teams once each month, tosupervise team activities and provide clinicalassistance to difficult cases. After the 6-monthreview, supervision was split into one visit formedical consultation, and one to supervise teammanagement. Simple forms are used to assistthe supervisors to give feedback on each aspect,and these are collated by the Home CareNetwork Co-ordinator and included inthe monthly reports to the HCNG.At present, management supervision isprovided by some members of the HCNG andsome of the Health Centre Managers. Medicalsupervision is provided by doctors on a rota basisdrawn up each month by the Home Care NetworkCo-ordinator. However, it is becoming increasinglydifficult to find doctors who are willing to providemedical supervision, even with the provisionof a small honorarium to cover travel expenses.Discussions with the HCTs clearly indicatethat the HCTs place great value on supervision,and visits by supervisors are welcomed. All theHCTs were emphatic that they would like moremedical supervision to assist them in dealing withdifficult medical cases and to help them improvetheir clinical and diagnostic skills, especially forTB. Enhanced management supervision wouldhelp to address issues of reporting and planningdiscussed earlier.Lesson learned: supportive supervision is akey component of the home care programmeand is highly valued by the home care teamsGiven the present difficulties of finding supervisors,it is difficult to see how the demands for moresupervision can be met using the existing system.Policy changes to integrate home care provisioninto the MoH system may help to facilitate theallocation of medical supervisors. However, thesupervisory needs of the HCTs are for morefacilitative and supportive supervision, rather thanjust more frequent supervision. Earlier sections ofthis report identified needs of the HCTs forrefresher training and a supportive approach tosupervision in a number of areas:- assessment ofsymptoms; analysis of needs; dispensingmedication; reporting; prioritising; planning visits.Following an earlier recommendation (Section4.6) that each HCT is "attached" to an existingreferral hospital, it is further recommended thateach hospital is responsible for providing supervisorysupport to their HCTs. In order to providegood supervision, the supervisors themselvesmust be resourced and trained in supportiveapproaches to supervision. A set of tools andapproaches has been developed by AVSCInternational which may help to address thisissue.It is recommended that the referral hospitalsprovide supportive medical supervisionpg 56

INPUTSAND PROCESSto their partner HCTs. The supervisors mustbe resourced and trained in facilitativesupervision.There is also a possible pool of resourceswithin the international and local NGO communitieswhich could be drawn upon to providesupervision to the HCTs and which could beresourced through the Home Care Network.It is recommended that the Home CareNetwork identifies and resources a pool ofsupervisors from government and NGOs toprovide facilitative supervision to the HCTs.Volunteers 5.10Beginning in August 1998, each HCT recruited 5Volunteers to assist the team with their work.Each Volunteer is expected to work approximately10 days per month, for which theyreceive a stipend of $12.The Volunteers are recruited from thecommunities in which they live. They are oftenrecommended by the local authorities in thecommunity, and are interviewed by the HCTsand selected on merit as part of the recruitmentprocess. The interviews assess their knowledgeof HIV/AIDS and their attitude towards PLHA,and whether their families will agree to themworking in this field.The HCTs provide 60 hours of training, andthe Volunteers are then attached to the teams.Most HCTs reported that they have identifiedmany people keen to work as Volunteers. Someof the HCTs felt that they could use moreVolunteers, but were restricted to amaximum of five by financial and managementconstraints.Discussions held separately with the HCTsand with the Volunteers clearly demonstratedthat the Volunteers are well integrated and playa number of important roles in the existinghome care programme. It is felt that the role ofVolunteers will be a key component of the programmewhen it is expanded to the provinces.Lesson learned: Volunteers play a number ofimportant roles in the home care programmeand are likely to be a key component in theexpansion programmeThe HCTs were unanimous and unstinting intheir praise for the work performed by theVolunteers. Because they are drawn from the communityin which they live, the Volunteers are wellplaced to facilitate links with other communityactivities, to ensure access and accessibility ofHCTs, and they are major sources of referral of newpatients to the HCTs.Unfortunately, there is quite a high turnover ofVolunteers. Sometimes this is because they takeup paid employment, but often it is because of illnessor death, as many of the Volunteers are themselvesHIV+. A number HCTs however, still havesome of their original Volunteers from August 1998.It is clear that the Volunteers generally workfar longer than the 10 days per month originallyallocated, with many working up to 20 days permonth. In our observations of the home careactivities, the Volunteers appeared to be professionaland committed in their dealings with thepatients.Discussions with a representative sample of16 volunteers drawn from eight of the HCTsrevealed that they come from a variety of back-pg 57

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiagrounds. Some were village leaders, otherswere students, while others were professionalswilling to give spare time to the programme. Anumber revealed that they were HIV positive.In addition to their work as part of the HCTs,the Volunteers felt that they were better placedto perform some roles which the HCTs were lessable to undertake. The evaluation concurs withthis view and notes that the Volunteers:• are a major source (perhaps the majorsource) of referral of new patientsThe Volunteers expressed the need for moretraining in stress management - for both thepatients and themselves, and said they sometimesfelt at risk in their work. One said that shehad been repeatedly threatened by a brothelowner, who refused access to his sex workers;another had been involved in a motorbike accidentwhile taking a patient to hospital; anotherhad contracted TB since joining the programme.To address these issues, theVolunteers requested a basic package of healthcover from the programme.• are trusted by the community and havegood access to local authorities, pagodas,phum leaders etc"We take risks to take care of patients; sometimeswe are exposed to dangers; we need some protection"[Female Home Care Volunteer, Phnom Penh]• often know about, and are able to developlinks with other community level initiatives,such as micro-credit and food distributionprogrammesWhen asked why they continued to work asvolunteers, despite the low remuneration andthe perceived risks, their responses wereunequivocal:• are well placed to identify and facilitateplacements of orphans within the community"The future of Cambodia is in the hands ofCambodians; we want to help our people"[Female Home Care Volunteer, Phnom Penh]• often have good relationships with traditionalhealers, and are in a good positionto help break down the mutual mistrustwhich sometimes exists between traditionalhealers and orthodox medicalpractitioners"AIDS is a kind of cold war that we need to fight"[Male Home Care Volunteer, Phnom Penh]"If we don't try to prevent AIDS and don't take careof its victims, there is no future for us or our children"[Female Home Care Volunteer, Phnom Penh]The Volunteers also made the valid pointthat, because they live in the community inwhich they work in home care, they are alwayspotentially on call by the community."We are on duty 24 hours a day, 7 days a week"[Male Home Care Volunteer, Phnom Penh]The Volunteers and the full-time HCTmembers all made a strong case forincreasing the stipend for Volunteers from $12to $20 per month, and for providing a basicpackage of health cover to all Volunteers. Theconsequences of adopting these suggestionshowever, should be carefully considered. Apg 58

INPUTSAND PROCESSstipend of $20 per month, and the provision ofhealth cover both signify a movement from'volunteer status' into 'employment status'. Thisreduces community participation, increases thelevel of external intervention and raises issuesof sustainability.The evaluation team believes that increasedvolunteer input would be highly beneficial to theprogramme, but also believes that the costs andliabilities of increasing the number of daysworked per month by the volunteers outweighthe benefits. The evaluation therefore suggeststhat there should be no upper limit on thenumbers of volunteers who are attached to aHCT, but recommends that an increase from 5to 10 would be sensible as a first step. One ofthe HCTs has already recruited an addition5 Volunteers (who are all PLHA). The evaluationfurther recommends that Volunteers arereminded that they are not expected to workmore than 10 days per month.Because of the essential package of activitiesprovided by the Volunteers, at minimal cost,we strongly recommend expanding andstrengthening Volunteer involvement in thehome care programme, both in Phnom Penh,but particularly in the provinces. In addition toclarifsying more specific roles for theVolunteers, measures such as regular meetingsand ID cards should be considered.would need careful planning and adequateresourcing, and would need to evolve over time.It is recommended that the Volunteerinvolvement in the Home Care programme inPhnom Penh and the Provinces is strengthenedand expandedIt is recommended resources are providedfor HCTs to increase the maximum number ofVolunteers per team from 5 to 10, and thatVolunteers are encouraged not to work morethan 10 days per monthIt is recommended that Volunteers beginto assume most of the social support responsibilitiesof home care provision, in additionto most of the non-patient-related activitiesIt is recommended that HCTs shouldreview and upgrade the skills of theVolunteers, to enable some to provide basiccounselling to PLHA and to support peercounselling by PLHAIn addition, outside of urban settings, it issuggested that Volunteers are attached to thevillage, rather than to the Home Care Team. Thisissue is dealt with at greater length in Section 7.2of this report.These measures would then enable the professionalHome Care Team staff to move up tothe next level of service provision, focusing onassessment, providing medical care andpsychosocial support to PLHA, and managementand supervision of the Volunteers. A"buddy system" could provide a support mechanismfor day-to day activities of the Volunteers.It is clear that an expanded system of Volunteerspg 59

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia5.11 Support groups and other linkagesDuring the internal review of the programmein June 1999, the HCTs identified the need toestablish support groups for PLHA. To date, sixsupport groups have been established by theHCTs, with a total of approximately 200 members.Many of the support group members arealso involved with home care, and some areVolunteers attached to the HCTs. The evaluationdid not talk specifically to the supportgroups, but discussions with patients, volunteersand the HCTs indicate that the supportgroups are starting to become an importantmechanism for education and psychologicalcare.While some HCTs are expanding their linkswithin the community, there appears to be nostrategic plans for identifying and establishinglinks with other community-based welfare andsupport initiatives. This will become increasinglyimportant as the numbers of patients expandand their needs and expectations begin toexceed what the HCTs can provide. As notedearlier in the report, the Volunteers can play auseful role here, given appropriate guidanceand support. However, the HCTs are alreadyfully stretched, and while the monthly meetingsof the HCNG sometimes address issuesof community links, the evaluation recommendsthat a more formal linking mechanismis established.It is suggested that the HCNG identifies andfunds one or more dedicated CommunityLiaison Officers, whose responsibility would beto map existing and new community resources,perhaps with the help of the Volunteers, andassist HCTs to facilitate the links betweenPLHA and these resources.It is recommended that that HCNG identifiesand supports Community LiaisonOfficers to improve and expand linksbetween HCTs and community-basedwelfare and support activities.pg 60

INPUTSAND PROCESSCaring for the Carers 5.12Providing professional home-based care isundoubtedly a stressful occupation. It takesgreat resilience to deal on a daily basis withPLHA, many of whom are chronically ill, somesuffering from depression, and some requiringterminal care. Furthermore, expanding numbersof PLHA and increasing expectations for care,support and welfare can only add to stress levelswithin the HCTs.Focus group discussions with the HCTsrevealed the perceived need for increased skillsin stress management, both for PLHA but alsofor the HCTs themselves. All of the HCTs alsoindicated the need for increased and improvedsupervision and support.Many of the HCTs raised concerns abouthealth and safety at work. In order to addressthese, and other issues related to better supportfor the HCTs, the evaluation offers the followingsuggestions and recommendations:• HCNG should provide ongoing training instress management to all HCTs• HCNG should provide more opportunitiesfor regular sharing of experiences andproblem solving, perhaps by bringingtogether clusters of 2 or 3 HCTs• NGOs/ MOH should provide motorcyclehelmets to all members of the HCTs• HCNG should investigate costs andbenefits of providing a package of basichealth cover to all HCT members. (MoHstaff and some NGO staff already havesuch cover)It is recommended that the HCNGaddresses the concerns of HCTs related tohealth and safety at work.pg 61

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia6 BATTAMBANG PILOTPROJECT6.1 The Home Care NetworkIn August 1999, two KHANA NGO partners,Battambang Women's AIDS Project (BWAP)and the Khmer Rural Development Agency(KRDA), each established a Home Care Team inpartnership with local MoH staff, and with financialand technical support from KHANA. TheBWAP/MoH team operated in Chai Serey, whileKRDA, in collaboration with the District ReferralHospital set up a HCT in Moung Russey,approximately 50 km south of Battambangtown. Both teams followed the same model asthe Phnom Penh HCTs.Because of internal problems within theNGO, BWAP suspended operations inDecember 1999, and home care services intheir district were discontinued. Following therecent resolution of the problems, it is anticipatedthat the BWAP team will shortly resumethe provision of home care activities in theirarea. However, this evaluation focuses onlyon the activities of the KRDA/MoH team inMoung Russey.The Moung Russey Home Care Team isbased on the same model as the Phnom Penhteams. The team consists of 3 NGO membersand 2 half-time government nurses from thelocal Referral Hospital. Because of renovationsat the hospital, the team is based in the KRDAoffices, although KHANA has recommendedthat they relocate to the hospital once space isavailable. Despite some initial problems, theMoung Russey team now appear to be workingwell as a joint MoH/NGO team.The HCT seems to have established a goodworking relationship with the Referral Hospital,who provide medical supervision to the team.Referrals for the HCT generally come from thecommunity, rather than from the hospital.Although the caseload is smaller, the teamspends more money on patient welfare than thePhnom Penh teams. The Home Care Teamargue that the patients are poorer than inPhnom Penh, but the Evaluation Team saw littleto justify this claim.6.2 Impactpg 62It is clear that the programme in Moung Russeyis having a major impact in improving the qualityof the lives of PLHA, their families and caregivers,increasing understanding of HIV/AIDSand reducing discrimination against PLHA.Discrimination against PLHA and theirfamilies seems less of a problem than inPhnom Penh, possibly because of closer and

BATTAMBANGPILOT PROJECTlonger-standing community relationships.During our limited visit, the evaluation teamobserved neighbours visiting patients and providingfood and care."Since the home care team started visiting meevery week, I want to keep on living. The communitytakes care of me and visits me more than before"[PLHA, Kansai Banteay]"My family now eats with me since the home care teamcounselled them and explained how HIV is transmitted"[PLHA, Kear 3]As part of the evaluation, 7 ex-patients fromthe suspended home-care team (BWAP) weretraced and followed-up to evaluate what changeshad occurred since the home care services hadbeen discontinued some 4 months ago.It was clear that the BWAP home-care serviceswere badly missed by all the ex-patients visited.Five of the seven ex-patients said their physicalheath had deteriorated badly; they complained ofrecurrent fever, diarrhoea and skin problems.When asked what they missed most about thehome care visits, medication and psychologicalsupport were most frequently mentioned.Community Links 6.3Because of the long distances involved, theHCT relies quite heavily on community organisationsto provide support to PLHA. Whereverpossible, the HCT tries to work with existingorganisations, but have themselves established12 community support organisations wherenone previously existed. Unlike Phnom Penh,where a number of PLHA live alone, almost allthe rural PLHA have caregivers.The Home Care Team has established goodrelations with community leaders in the 9Communes in which they operate. As part of theevaluation, the Evaluation Team conducted afocus group discussion with 14 communityleaders representing all 7 villages in Ko KohCommune. This group consisted of VillageHeadmen and Village Association Leaders.The Home Care Team presently works in 5 ofthese 7 villages. The discussion with the communityleaders highlighted the impact made bythe HCT in the 5 villages in which they operate,compared with the remaining 2 villages. Theleaders from the 5 villages visited by the HCTsnoted that the HCT takes care of PLHA, butmore importantly, have taught and encouragedthe community to care and support the patients."They are helping us to help each other. I thank thegods that they have come to our village"[Village Headman, Ko Koh]The community leaders emphasised that theHCT activities converge with other communitylevelsupport activities, and help to relieve someof the burden of the community, improve healthand reduce discrimination against PLHA."Their education work they do is important for thehealth of our village. The patients are waiting (for theHCT). Before, we felt that people with AIDS wereevil and deserved to die. Now we talk together, sittogether, play cards together"[Village Headman, Ko Koh]pg 63

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaIt was clear that the HCT had also had a significantimpact on knowledge and understandingof HIV/AIDS, especially modes of transmission."Before the home care team visited our villagewe knew nothing about HIV/AIDS. Thanks to them,people now know about prevention. They have alsolearnt about sanitation and how to take care ofthemselves"[Village Association Leader, Ko Koh]"Before the home care team came we did noteven dare to approach people with AIDS. Now wecan touch them, hold them, eat with them and helpto feed them"[Village Headman, Ko Koh]This latter comment provoked a barrage ofquestions from the 4 leaders from the 2 villageswhich were not visited by the HCT. These fourmen seemed genuinely surprised that peoplecould touch and eat with PLHA, and wanted toknow about methods of transmission. Theimpact of the HCT's HIV/AIDS educationprogramme was clearly demonstrated when theleaders from the 5 villages visited by the HCTprovided the answers themselves.It should be noted that, in addition to theirHome Care Team, KRDA have a PreventionTeam operating in the area, who may (also) havebeen responsible for educating the community.In order to avoid duplication of effort, KRDA arein the process of combining their Care andPrevention Programmes.The community leaders suggested appointingvolunteers to act as liaison persons in eachvillage, to provide a nodal link with the HCT.These volunteers would need to be trained andwould require a little financial support. The leadersfelt that, with adequate resources and support, asystem of volunteers would be key to reaching allPLHA in rural areas.6.4 VolunteersThe team has recruited 4 Volunteers, two of whomare themselves HIV+. The Volunteers receive astipend of $15 per month (compared with $12 inPhnom Penh). As the Volunteers live in thecommunity, they have established close links withthe patients and play a major role in providingcounselling and support to PLHA, their families andcaregivers. As in Phnom Penh, the Volunteers arebecoming a major source of referral of patients.There is apparently no shortage of volunteerswilling to work alongside the HCT, but thenumber that can be recruited is limited by thefinancial resources available in the NGO grants tosupport them.6.5 Access/coveragepg 64It is clear that one HCT is limited in its ability toreach the majority of PLHA. Moung RusseyDistrict, covering an area of some 1000 sq km,has 13 communes, and the HCT presentlyworks in 9 of these. The team visits patients in21 villages, but they are unable to cover the

BATTAMBANGPILOT PROJECTremaining 88 villages in the area. Although somevillages are quite accessible, many are distant(up to 20 km) and the road conditions are oftenpoor. Travelling to these (even in the dry season)can take 40-50 minutes. During the rains,access is often impossible.It is estimated that up to 25% of allocatedpatient contact time is spent travelling to visitpatients. Transport costs are correspondinglyhigh and the team spends over $120 per monthon travel (compared with $80 per team inPhnom Penh).Because of the time spent on travel, themaximum patient caseload of 60 is lower thanin Phnom Penh at 80. It is estimated that thenumber of visits over the operating periodaverages at 154 per month.An extremely rough estimate of coverage ofthe district by the HCT can be made if weassume an even spread of PLHA throughout thevillages of the district. The HCT visits 21 (i.e.19%) of the 109 villages. If, as in Phnom Penh,the HCT reaches between 50-80% of the clientsin the areas they visit, this indicates that theteam will only provide 10 -15% coverage inthe district.pg 65

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia7 EXPANSION OFTHE HOME CAREPROGRAMMEThe forthcoming MoH/NCHADS StrategicPlan for HIV/AIDS Prevention & Care has, asone of its strategic goals, the extension andexpansion of the Home-based Care programmenation-wide. The findings of this evaluationstrongly support such an expansion.As the report has indicated earlier, it is clearthat the programme in Phnom Penh, and thepilot initiative in Battambang are having a significantimpact on quality of life of PLHA and theirfamilies, on reducing discrimination and improvingprevention, and on addressing some of theneeds of the poorest and most vulnerablemembers of society.Extending and expanding the programmeraises a number of key questions:1. what are the key components ofHome Care provision which need tobe in place for an expanded programmeto be successful?2. can the model used in Phnom Penh (andthe Battambang pilot) simply be replicatedin rural areas, or are there alternativemodels which may be more suitable?3. how should the expansion be phased, andwhere should it begin?4. which institutions and/or organisations arebest placed to implement the expandedprogramme?5. what mechanisms should be in place toco-ordinate and manage the expandedprogramme?6. which institutions and/or organisations arebest placed to provide technical support?7. what will be the costs involved in expansion?and of course:8. are there sustainable sources offinancial support available to resourcethe programme?This section of the report will address thefirst two questions, and will attempt to providesome insights into the remainder.7.1 Key ComponentsSection 5 of this report reviewed the inputs andprocesses involved in establishing and maintainingthe existing Home Care programme. It willbe useful to summarise here the key componentsof the programme which have contributedto its success, and which should ideally beincorporated in its expansion. These include:pg 66

EXPANSIONOF THE HOME CARE PROGRAMME• A well-resourced and supportive HomeCare Network• The establishment of strong partnershipsbetween MoH and NGOs• Selective team formation and composition• Expansion and integration of volunteersinto the programme• Close linkages with the community,increasing community involvementand ownership• Appropriate initial and ongoing trainingprogramme and local NGOs who participatein the programme• between KHANA and their partner NGOswho support the Home Care teams• between the Home Care Teams and theHealth Centres at which they are based• between the Home Care Teams and leadersof the communities in which they work• between the government and NGO HomeCare Team members who implement theprogrammeThese partnerships have enabled scarceresources to be shared, and have ensured thatthe comparative advantages of each of theplayers have been effectively utilised.• The provision of adequate technical andfinancial resources and support• Ongoing reviews, monitoring andevaluationLesson learned: partnerships have enabledscarce resources to be shared, and haveensured that the comparative advantages ofeach of the players have been effectivelyutilised.• The establishment of a supportivesystem of medical and managementsupervisionEach of these will be briefly reviewed in thesections below:7.1.1 The establishment of strongpartnershipsThis evaluation has noted that good partnershipsexist at a number of levels in the HomeCare programme:• between MoH/NCHADS, KHANA and theinternational NGOs who support theBasing the HCTs in MoH Health Centres hasassisted in convergence with the public healthsystem, and has gone some way to promote asense of shared ownership of the programmebetween MoH and NGOs. More equitablesharing of financial responsibilities andcommitments between government and NGOswill further enhance shared ownership.However, the implications of transferring (atleast some of) the responsibility of financialsupport from KHANA and the NGOs to MoHhas not been evaluated.Partnerships between the home careprogramme and referral hospitals in PhnomPenh have been less successful. It will beimportant to establish and maintain good linkspg 67

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiabetween the home care programme and referralhospitals and health centres in theProvinces.7.1.2 Selective team formation andcompositionFindings from this evaluation indicate thatthe selection of the right personnel and achievingthe right mix of skills and experience in theHCTs is critical to successful team working.Combining staff with medical backgroundsand those with experience in AIDS preventionand counselling in the Home Care Teams hasbeen instrumental in providing a comprehensiveservice to PLHA and their families. It has alsofostered cross-learning and improved understandingbetween the MoH and NGO staff.Using a process of competitive selection hasensured that the right staff with the right attitudesare recruited onto the teams.7.1.3 Expansion and integration ofvolunteers into the programmeThis evaluation found that Volunteers areincreasingly fulfilling a number of importantroles in the Home Care Programme:• They are proving to be the major source ofreferral of new patients• They often occupy positions of trust withinthe community and are well placed to facilitategood access to local authorities, pagodas,phum leaders, etc.• They are well placed to develop links othercommunity level initiatives, such as microcreditand food distribution programmes• They are well placed to identify and facilitateplacements of orphans within the community• They often have good relationships withtraditional healers, and are in a good positionto help break down the mutual mistrustwhich sometimes exists between traditionalhealers and orthodox medical practitionersIt is recommended that Volunteer involvementis expanded and strengthened and thatVolunteers begin to assume most of thesocial support responsibilities of home careprovision, in addition to many of the nonpatient-relatedactivities7.1.4 Close linkages with the community,increasing community involvementand ownershipDuring a participatory review of the HomeCare programme the Home Care Teams identifiedthe support from community leaders as themost important factor contributing to the successfulimplementation of their work. This wasreiterated during discussions held with HCTsduring this evaluation.Lesson learned: support from communityleaders is an important factor contributing tothe successful implementation of the workof the HCTsIn addition to helping to ensure support fromlocal authorities, establishing close linkageswith the community is important in accessingexisting community-based welfare initiativesand in mobilising community resources to supportprogramme activities.pg 68

EXPANSIONOF THE HOME CARE PROGRAMME7.1.5 Appropriate initial and ongoingtrainingOn recruitment, very few of the HCT staffwere familiar with the key aspects (clinical,psychological, social and educational) of homecare provision. Initial training, including communityplacement, in the essential aspects of homecare was therefore essential preparation forwork in the HCTs. In addition, during the twoyears of the programme, KHANA has supportedand/or provided up to five further orientationsand updates for the home care staff. Thesetraining sessions have been in response to identifiedneeds to update or provide new skills.The evaluation team believes that adequateand appropriate initial training, supplementedby responsive, preferably on-the-job, refreshertraining are key components to maintain professionalismof home care provision.appropriate mechanism to ensure continuousfinancial support to the home care programme.There are some indications that a number ofdonors are expressing interest in supporting thehome care programme. This would provide anexcellent opportunity to trial a sub-sector-wideapproach of donor support to a healthprogramme and the evaluation recommendsthat this approach should be explored.It is recommended that donors explorethe possibility of trialing a sub-sector-wideapproach to funding the Home CareProgramme in Cambodia.7.1.7 Ongoing reviews, monitoring andevaluation7.1.6 Provision of adequate technical andfinancial resources and supportSince the WHO pilot period, technical andfinancial support has been provided to the participatinglocal NGOs and government teammembers by KHANA with support from MoHand the AIDS Alliance, while World Vision andMaryknoll have supported their own HCTs, bothwith donor support. This support has resulted inincreased capacity of the NGOs to manage theirHome Care Teams, and of both MoH and NGOstaff of the HCTs to manage their work programmes.This evaluation recognises the importanceof this support and emphasises that it willbe an essential component in the expandedprogramme. It will be important to identify theParticipatory and external reviews, monitoringand evaluation are essential components ofany programme, and especially an evolving programme.This evaluation notes that the manyreviews and evaluations have helped shape andimprove the Home Care programme. It is to thecredit of those involved in managing its implementationthat they have demonstrated flexibilityand responsiveness in modifying the programmeto accommodate evaluation findings.Lesson learned: participatory reviews andresponsive management have played animportant role in helping to shape and guidethe home care programme.Developing and establishing a participatoryreview system, which monitors both processpg 69

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiaand impact, and includes appropriate indicators,will be an essential component of an expandedhome care programme. Identifying appropriatetechnical resources will be a necessary first stepin establishing an impact monitoring system.7.1.8 Establishment of a supportivesystem of medical and managementsupervisionGood supervision has been shown to be akey factor in the provision of quality services,and yet is often the missing link in service deliveryprogrammes. The findings of this evaluationdemonstrate the importance of, and demand fora supportive supervisory system to address themanagement and medical needs of theproviders of home-based care.A supportive supervisory structure will beparticularly important in the rural areas wherelong distances between centres and villages arelikely to result in greater isolation of home careproviders from resource centres7.1.9 A well-resourced and supportiveHome Care NetworkThe evaluation notes that the establishmentand maintenance of the Home CareNetwork in Phnom Penh has been critical inhelping to ensure co-ordination of support,improve linkages and assist the programme tobetter meet the increasing demands forimproved care and support at low cost.The establishment of similar Home CareNetworks at Provincial level will be beneficialto help manage and co-ordinate the expansionof home care activities in the provinces.They are likely to play an important part inco-ordinating activities, avoiding duplicationand ensuring co-ordination of technicalsupport and training, establishing andmaintaining links with other initiatives andinstitutions and facilitating monitoring ofprocess, outputs and impact.7.2 Expansion ModelsAlthough the home care model described in thisreport works efficiently and cost-effectively inPhnom Penh, there are dangers in simply transferringthe model wholesale to the Provinces. Theprevious section highlighted the key componentswhich contribute to the success of the model,and which should be replicated in the expansion.However, one major difference betweenPhnom Penh and most of the Provinces, is thelarge distance between villages, health centresand hospitals, and between the villages themselves.As shown by the Battambang pilot,using professional HCTs with the same cadresof staff as in Phnom Penh to visit patients in outlyingvillages is neither efficient nor cost-effective.It is estimated (see section 6.6 of thisreport) that the existing model in Battambang isonly providing between 10-15% coverage inthe district.Furthermore, cost estimates discussed earlierin the report (section 4.4.3) indicate that thecost of providing services in rural areas usingpg 70

EXPANSIONOF THE HOME CARE PROGRAMMEthis model can be significantly higher than thecost of providing similar services in urban areas.It is clear that HIV infection is well-establishedand has reached the general populationin every province 39 . Given the current prevalencerate, it is estimated that a typicalOperational District (O.D.) will have between1000-2000 PLHA. Using the present Battambangpilot/Phnom Penh model, where the rural HCThas a patient load of 60 per month, this wouldindicate that between 10-25 HCTs per O.D.would be necessary to give the degree of coveragepresently provided in Phnom Penh. Giventhe limited infrastructure and human resourcesin the provinces, and the uncertainty of financialsupport, it is unlikely that this approach willbe feasible.There are a number of alternative partnershipand funding options for expansion ofthe programme to the provinces. Based on thefindings of this evaluation, four possibilities aresuggested below:Option 1Adapt and scale up the existing model toselected provinces, maintaining the current keycomponents:• Home Care Team structure consistingof government nurses, NGO staff andcommunity volunteers.• co-ordination by a representative networkgroup, through the Provincial AIDS Office• funding through NGOs with donor support• external Technical Assistance toco-ordinate the networkBased on lessons learned from the ruralpilot, the adaptation could conceivably involve:• A 4-person District-level Home Care Teambased at the Referral Hospital (OperationalDistrict Level) rather than Health Centre(Commune Level)• The District-level HCT liases directly with 2person Commune HCTs based at eachHealth Centre• Commune HCTs liase with Village HomeCare Volunteers (1 or 2 per village), who willbecome the grass-roots providers of homebasedcare.It is estimated that the above adaptations tothe rural environment will enable up to 1,500patients to be visited per O.D, an average of 3times a month, at a programme cost of between$50-70,000 a year.Option 2The model outlined above would beemployed, but all funding would be providedthrough the government, rather than throughNGOs. It should be noted that whilst this optionis entirely possible, it has not yet been tried. It islikely that external Technical Assistance wouldstill be required to co-ordinate the Network andprovide training to Home Care staff.Option 3Again, use the above model, but with governmentfunding the government component, whilstthe NGO component is funded from non-governmentsources. Again, while this mechanism ispossible, it has not been tested.39 Consensus workshop on HIV/AIDS in Cambodia, Phnom Penh, 1999 op.cit.pg 71

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiapg 72Option 4Although the evaluation has shown that government/NGOpartnerships are key to the successof this approach, ministries other than the Ministryof Health (for example the Ministry of Women's &Veterans' Affairs) could be involved to a greater orlesser extent. It is likely that there would still be arequirement for external technical assistance.A key evaluation recommendation for theexisting urban Home Care Network to become anindependently resourced group should also applyto future Provincial Home Care Networks, howeverfunded. The Provincial AIDS Office (PAO) is wellplaced to host the Network, perhaps with joint coordinatorsfrom the PAO itself and an NGO. It isreasonable to assume that technical support willbe required from both NCHADS and perhaps anexternal source, such as KHANA, to ensure thatProvincial Networks are well established andresourced. In addition, it is likely that ProvincialHome Care Networks will need technical assistanceto enable them to respond to the trainingneeds of the home care staff, and in establishingeffective referral and monitoring systems.The options outlined above all draw onthe key components reviewed in the previous sectionof this report, namely:• good partnerships (between MoH,NGOs/CBOs and possibly other ministries)• selective team formation and composition• expansion and integration of volunteers(who are now likely to be the primaryproviders of home-based care)• closer community participation (the homecare programme is now located within thecommunity, fostering greater ownershipand involvement)• supportive supervisory system (operatingat three levels, and converging with theexisting MoH supervisory system)• a supportive home care network (drawingon resources of key partners throughoutthe province).It should be reiterated that if this model is tooperate effectively, it is important that the otherkey components outlined in the previous sectionare also put in place. These include:• appropriate initial and ongoing training• adequate technical and financial resourcesand support• ongoing reviews, monitoring and evaluationThese are only a few of a number of possibleoptions for consideration. The costs associatedwith these models will need to be carefully estimated.However, it is likely that they will be significantlyless than those associated with simplyreplicating the present model throughout the O.D.The evaluation team recommends that thecost-benefits of these, and other models, shouldbe examined. Given the diversity of resourcesand capacities of various players in differentProvinces it would be wrong to be prescriptive atthis stage. It may be that different models areneeded for different Provinces, and that the existingPhnom Penh model would operate effectivein urban centres in other Provinces.It is recommended that NCHADS andpartners examine the cost-benefits of differentmodels for expansion. Different models may beneeded for different locations.It is recommended that NCHADS and partnersensure that key components are includedwhen expanding the programme to the Provinces

EXPANSIONOF THE HOME CARE PROGRAMMEPhasing the Expansion 7.3A key lesson learned by the evaluation aboutsetting up the existing home care programmewas the importance of careful planning toensure that the key components were in place.This included developing appropriate systemsand procedures, establishing effective partnerships,creating awareness and fostering ownershipat each stage. The time taken to do thisshould not be underestimated.In order to ensure that these elements are inplace at Provincial level, and given the limitationson human and financial resources, it issuggested that the planned expansion takesplace in several phases over the coming years.It might be appropriate to limit the expansion,at least initially, to the Provinces whichhave operation systems for VoluntaryCounselling & Testing (VCT). At present thisincludes Battambang, Siem Reap, KompongCham and Kompong Som. This will facilitateintegration of the programme into existing networks.It may also be appropriate to begin inAccelerated Development Districts (ADDs)which have operational Health Centres.Roles and Responsibilities of Programme Partners 7.4For an expanded model to be effective, severalkey institutional and structural questions need tobe addressed:-1. which institutions and/or organisationsare best placed to implement theexpanded programme?2. what mechanisms should be put in placeto co-ordinate and manage the expandedprogramme?3. which institutions and/or organisations arebest placed to provide technical support?As Government/NGO partnerships haveproved so successful in implementing the existingprogramme, this evaluation recommendscontinuing these partnerships in implementingthe expansion. There are sensitive issues relatedto funding and control of funds which willneed to be addressed as and when potentialfunding sources become clearer.It would be wrong to be prescriptive inidentifying institutions to manage and coordinatethe expansion, and in any case, this isbeyond the scope of the evaluation. However, itis clear that MoH/NCHADS are extremely wellplaced to manage and co-ordinate the expansionthrough existing MoH structures. In someProvinces the PAOs will be able to co-ordinatethe Home Care Networks which will play animportant role in providing support to theprogramme. In some Provinces, other mechanisms,such as PAC/PAS may be better placedto perform this role.It is recommended that MoH/NCHADStakes the main co-ordinating role in expandingthe Home Care Programme in Cambodia.With regard to support, KHANA has beenproactive and effective in providing both technicaland financial support to the existingpg 73

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodiaprogramme. KHANA and other organisations,such as World Vision will need to make internaldecisions on whether they wish to increasetheir support as the programme expands to theprovinces. As the programme goes to scale, itis clear that other organisations and institutions,perhaps drawn both from governmentand NGO sectors will be needed to providefinancial and technical resources. Sharingresources between many partners has helpedand will continue to help to reduce costs andimprove coverage. The Multi-sectoral Unit ofNCHADS is well-placed to identify and coordinategovernment partnerships, whileKHANA is perhaps best placed to identify andco-ordinate NGO partnerships.If it is decided that KHANA should beinvolved in the expansion programme, then it isrecommended that the Alliance should increaseits financial support to KHANA for prevention,care and support activities, while maintainingits present level of technical support.It is recommended that the Allianceshould increase its financial support toKHANA for prevention, care and supportactivities, while maintaining its present levelof technical support.Given that strong government/NGO partnershipshave contributed significantly towardsthe success of the Cambodia Home CareProgramme, it is recommended that theAlliance considers using this model elsewhere.It is recommended that the Allianceconsiders using the Cambodian Home CareModel in other AIDS care programmes thatthey support.pg 74

8 SUMMARY OF KEYCOMPONENTS, LESSONSLEARNED ANDRECOMMENDATIONSThis section provides a summary of the key componentsof the home care programme, togetherwith lessons learned and recommendations forimproving the programme in Phnom Penh andexpanding the programme into the Provinces.Key Components of the Home Care Model 8.1• A well-resourced and supportive HomeCare Network• Strong government/NGO partnerships• Selective team formation and composition• Integration of volunteers into theprogramme• Close linkages with the community, increasingcommunity involvement and ownership• Appropriate initial and ongoing training• The provision of adequate technical andfinancial resources and support• Ongoing reviews, monitoring and evaluation• The establishment of a supportive systemof supervisionLessons Learned 8.2• Home Care Network Group Meetings providevaluable feedback, co-ordination andsupport to the HCTs and are an importantcomponent of the home care programme• A competitive selection procedure for HCTsto ensure the right staff with the right set ofattitudes towards PLHA is important toensure quality home care provisionpg 75

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia• Achieving the right balance of skills,experience and gender within a team andfostering team support and collaborationare important inputs in setting up thehome care programme• Comprehensive training for the HCTs, usingparticipatory approaches where appropriate,is essential preparation for initiatinga home care programme• Supportive supervision is a key componentof the home care programme and is highlyvalued by the home care teams• Volunteers play a number of important rolesin the home care programme and are likelyto be a key component in the expansionprogramme• Strong NGO/government partnerships haveenabled scarce resources to be shared, andhave ensured that the comparative advantagesof each of the players have beeneffectively utilised• Support from community leaders is animportant factor contributing to thesuccessful implementation of the workof the HCTs• Participatory reviews and responsivemanagement have played an importantrole in helping to shape and guide thehome care programme.8.3 Recommendationspg 76Home Care NetworkIt is recommended that:• The Home Care Network group becomesan autonomous unit with its own resourcesand financial support in order to ensureco-ordination of technical support, improvelinks with other initiatives and facilitatemonitoring.• The Municipal Health Department AIDSOffice begins to assume responsibility forco-ordinating the Home Care Network inPhnom Penh• Because of its capacity and presentinvolvement in the programme, KHANAis approached to provide technical andfinancial support to facilitate the expansionand relocation of the Home CareNetwork Group• The HCNG seeks technical support tofacilitate the process of establishing animpact monitoring system for the homecare programme, including developingappropriate indicators• The Home Care Network Group addressesthe concerns of HCTs related to health andsafety at work• organisations wishing to provide homebasedcare are federated to the HomeCare Network• CENAT is included in the list of collaboratinginstitutions of the Home Care Network• a representative from the Home CareNetwork Group is invited to be on theHIV/TB working group chaired by NCHADS• HCNG identifies and supports CommunityLiaison Officers to improve and expandlinks between HCTs and community-basedwelfare and support activities

SUMMAR Y OF KEY COMPONENTS,LESSONS LEARNED AND RECOMMENDATIONSHome Care ActivitiesIt is recommended that:• The Home Care Network Group initiates areview process to clarify and agree strategicpriorities for home care activities and torationalise the roles and responsibilities ofthe home care teams• Home Care Teams (HCTs) should onlyprovide money to PLHA against specificcriteria which are agreed in consultationwith the Home Care Network• The Home Care Network Group reviewswith the HCTs the system of monitoringand reporting patient numbers and teamactivities• MoH includes drugs used in Home CareKits in the Essential Drugs list• Central Medical Stores initiates steps toprovide drugs for Home Care Kits throughHealth Centres• Home Care Network Group reviews the criteriaand rationalises the process of prescribingmedicines to patients.• The Home Care Network Group reviews thecriteria for home care provision of prophylacticBactrim to HIV patients in Cambodia,ensuring that there are clear guidelines forselection and monitoring of patients.Referrals, Supervision and TrainingIt is recommended that:• The HCNG strengthens the hospital referralsystem by reinstating the system of attachingeach of the HCTs to one of the main referralhospitals in Phnom Penh. The designatedhospital would then assume responsibilityfor medical supervision and facilitate referralsfor their partner HCTs• Home-based Care activities are further integratedinto the programme of work of HealthCentres in Phnom Penh and ReferralHospitals in the Provinces• Referral hospitals provide supportivesupervision to attached HCTs. Supervisorsmust be resourced and trained in facilitativesupervision• The Home Care Network identifies andresources a pool of supervisors fromgovernment and NGOs to provide facilitativesupervision to the HCTs• The Home Care Network Group reviews andstrengthens the system of record keeping,planning and prioritising visits to patients• The Home Care Network implements aschedule of ongoing refresher training andorientations to deal with emerging issuesfacing HCTs. KHANA, NGOs, MoH andother ministries could act as resourceswith funding and support through theHome Care Network• The draft training pack used in initial trainingis updated and developed into a trainingresource pack for use when the home careprogramme is expanded• The AIDS Care Handbook is translatedinto English and 1000 copies are printedfor distribution to NGOs/IOs• Pictures from the Home Care Stories areincorporated into a flipchart for teachingpurposes by organisations working in thefield of AIDS care.• Module on "Managing Client Expectations" isincluded as part of the ongoing counsellingtraining provided to HCTsVolunteer ExpansionIt is recommended that:• The Home Care Teams expand andstrengthen Volunteer involvement in thehome care programme in Phnom Penhand the Provincespg 77

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia• The maximum number of Volunteers perteam is increased from five to ten andVolunteers are encouraged not to workmore than 10 days per month• Volunteers begin to assume more of thesocial support responsibilities of homecare provision, in addition to many of thenon-patient-related activities• The HCTs review and upgrade the skills ofthe Volunteers, to enable some to providebasic counselling to PLHA and to supportpeer counselling by PLHAProgramme ExpansionIt is recommended that:• NCHADS and partners examine the costbenefitsof different models for expansion.Different models may be needed fordifferent locations• NCHADS and partners ensure that keycomponents of the home care modelare incorporated when expanding theprogramme to the Provinces.• MoH/NCHADS and partners considerestablishing Home Care Networks atProvincial level. These are likely to playan important part in co-ordinating activities,avoiding duplication and ensuring coordinationof technical support andtraining, establishing and maintaininglinks with other initiatives and institutionsand facilitating monitoring of process,outputs and impact.• Donors explore the possibility of trialinga sub-sector-wide approach to fundingthe home care programme in Cambodia• MoH/NCHADS takes the main co-ordinatingrole in expanding the home care programmein Cambodia• The Alliance increases its financial supportto KHANA for prevention, care and supportactivities, while maintaining its present levelof technical support• The Alliance considers using theCambodian Home Care Model in otherAIDS care programmes that they support.pg 78

APPENDICESpg 79

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX I1aQuestions for Patients and Families (to be asked by neutral interviewer)Name of team that visits this family:Interview number:Introduce interviewer and explain the purpose of the interview.Ask permission from the patient & family before proceeding.Age of patientSex of patientIntroductory questions1. How did you first hear about the Home Care Team? (tick one)o in hospitalo at the health centreo at homeo from a neighbouro at a phum meetingo at the pagodao other (..........................)2. a) How soon after you heard about the Home Care Team did youfirst meet them?b) How long ago was this?3. Where did you first meet the Home Care Team? (tick one)o in hospitalo at the health centreo at your homeo at a phum meetingo other (..........................)pg 80

APPENDIX1a4. a) How often do they visit you each week? (tick one)oooooless than onceoncetwicemore than twicewhenever necessaryb) How do you feel about the frequency of visits?(tick one)oootoo oftennot often enoughabout rightc) How often would you like to be visited by the Team?Referral5. a) Has the Home Care Team ever taken or sent the patient to a healthcentre, a hospital or a testing centre? YES / NO (circle one)If YES:b) When was the last time:c) Which facility was the patient sent or taken to?d) Who accompanied the patient?e) What were the good things which happened during the visit?f) What were the not-so-good things which happened during the visit?g) What difference (if any) did the Home Care Team make to how thepatient was treated during the visit?Questions specifically to the patientImpact6. a) Have you been diagnosed as HIV+? YES / NO (circle one)If YES:b) When were you diagnosed as HIV+?pg 81

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia7. What effect has the Home Care Team had on the following:a) your understanding of HIV/AIDSb) your general well-being and physical healthc) the number of visits you make to hospitald) the time you spend in hospitale) the time it takes to get medicines at the hospitalf) the time and money you spend on traditional healersg) the way you are treated by your familyh) the way you are treated by the local communityi) the way you look after yourself (e.g. nutrition, hygiene)j) your sexual behaviourk) how much you feel in control of your own lifel) your outlook (attitude about the future)m) your plans for the future of your dependants (if relevant)n) your comfort in sharing information about your HIV status with others8. If you didn't have Home Care support, how might things be different (if at all)?Questions to the family/caregiver (If the patient is living alone, go to Qu 11)Impact9. What effect has the Home Care team had on the following:a) your understanding of HIV/AIDSb) the time you spend on care of the patient in the homec) the amount of money you spend on care of the patient in the homed) the time you spend accessing clinics, hospitals or pharmaciese) the amount of money you spend accessing clinics, hospitals or pharmaciesf) the time and money you spend accessing traditional healersg) how able you are to provide carepg 82h) how you prevent transmission of HIVi) how the community behaves towards your familyj) how you cope overall with the situation of having a person living inthe family with HIV/AIDS

APPENDIX1a10. If you didn't have Home Care support, how might things be different(if at all)?Children11. Are there any children in the family? YES / NO (circle one)If YES:Since the patient became sick, how has this affected the livesof the children?a) Have they had to start working? YES / NO (circle one)b) Have they had to provide care or take up other major additional householdduties? YES / NO (circle one)c) Have they had to leave school? YES / NO (circle one)d) Have they had to go without things (e.g. food, clothes, books?)YES / NO (circle one)e) Have they had to leave the home or live in another household?YES / NO (circle one)12. Has participating in the home care programme resulted in any changesfor the children in the household? YES / NO (circle one)If YES:What changes?Income13. a) Has the patient had a decrease in earnings due to illness?YES / NO (circle one)If YES:b) Can you estimate how much per week?c) What difference (if any) has home care team support made here?14. a) Since the patient was diagnosed as HIV+, have family earningsdropped as a result? YES / NO (circle one)If YES:b) Can you estimate how much per week?c) What difference (if any) has home care team support made here?pg 83

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia15. a) Since the patient was diagnosed as HIV+, have you received anyfinancial support from others (e.g. NGOs) to help with expenses?YES / NO (circle one)If YES:b) Can you estimate how much per week?c) What difference (if any) has home care team support made here?If there is a caregiver outside the family, e.g. a neighbour, ask Qu 1616. a) Have the caregiver(s) had a change in earnings due to thedemands of care? YES / NO (circle one)If YES:b) Can you estimate how much per week?c) What difference (if any) has home care team support made here?Expenditure17. Can you estimate how much money you spent per week on medicines,traditional healers and clinic visits when you were sick, but before thehome care team began visits?18. Can you estimate how much money you spend per week on medicinesand clinic visits since the home care team began visits?19. Do the home care visits save you money or cost you more money?How much money per week?20. Do the home care visits save you time or cost you more time?How much time per week?Home Care Support21. a) Does the Home Care Team use the home care kit?YES / NO (circle one)If YES:b) What items have you been given from the kit?pg 84c) Are there other things that you really need that you don'treceive from the kit?

APPENDIX1a22. What other material and financial support does the Home Care Teamprovide to the patient & the family?23. What other support does the Home Care Team provide?24. Has the Home Care Team ever mobilised support from communityleaders, neighbours, monks, etc. to help you?YES / NO / DON'T KNOW (circle one)25. Has the Home Care Team ever put you in touch with local supportgroups? YES / NO (circle one)26. Has the Home Care Team ever helped you to get support fromother programmes? (e.g. food aid, micro-credit, specialised socialor medical care) YES / NO (circle one)27. Do you know where the Home Care Team comes from?28. What are the most valuable things (if any) about home care visitsto you and your family?29. Would you recommend, or have you ever recommended, theHome Care Team to another family? YES / NO (circle one)30. What suggestions do you have on how home care visits and teamscan be improved?Thank the patient and family for their time and co-operation.pg 85

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia1bInterview Guide for Phum Leaders, Monks, other LocalAuthority and Community Leaders (to be asked by neutral interviewer)Home Care team Number ..........................................Name ..........................................................................Type of community leader ..................................................................Village/Pagoda ....................................................................................1. Do you know about the Home Care Team who visit people with chronic/illnesses in your area? YES/NO (circle one) (If NO, terminate the interview)2. Do you know what work the Home Care Team does?3. Does the work that they do fit in with or disturb other communityactivities?4. Have you ever put a family in contact with the Home Care Team?YES/NO (circle one)If YES:How many families?5. How did you first hear about the Home Care Team?6. How often do you meet with the Home care Team?7. What effect do you think the Home Care Team has on communityawareness and understanding of HIV/AIDS (including how to preventHIV infection)?8. What difference (if any) do you think the Home Care Team has on theattitudes & behaviour of people in the community towards people withHIV/AIDS?pg 86

APPENDIX1b9. What difference (if any) do you think the Home Care Team has oncommunity mobilisation to support people living with HIV/AIDS?10. Does everyone in your community who has HIV/AIDS have access to thehome-care teams? (Do you know people in your community who haveHIV/AIDS but are not visited by the Home Care Teams?)11. How do you feel about the work that the Home Care Team does forpatients and families of people living with HIV/AIDS (ask for examples)12. How do you feel about the work that the Home Care Team does forother members of the community (ask for examples)13. Do you have any suggestions on how the work of the Home Care Teamcan be improved?pg 87

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia1cQuestions for Home Care Teams:Semi-structured Interview GuideInputs• Describe the range of Home Care activities, both patient-related andnon-patient related.• Describe how you conduct Home Care visits (frequency, duration,approach, activities, contact persons)• Is there the right balance between material support to patient & family/Psychosocial and spiritual support to patient & family / Medical careof patient• Volunteer involvement - how well is it working? Should it be expanded?• Medical care of patient - the contents, appropriateness and adequacy ofhome care kit; adequacy of medical knowledge; knowledge of TB/DOTS• Linkages with, and support from, other programmes(food aid, micro-credit, etc)Process• Team selection - what was the process?; Was there value in this?• Training - initial and on-the-job; need for further training?• Monitoring and reporting - process; usefulness, problems encountered• Supervision - process; usefulness, problems• What is the process of identifying families for home care visits? Is thiseffective? Where do the referrals come from?• What is the process of arranging visits? Are there any problems ofidentifying & responding to needs• Record keeping - process; usefulness, problems• How well are partnerships working? (NGO/Gov) (HCTs/medical facilities)• Referral system - referral of patients to programme by health centres,hospitals & community; referral by programme to health centres &hospitals. How well are these working? What can be done to improvethe system?pg 88

APPENDIX1c• What are your estimates of access & coverage of the programme?• Involvement of PLHA - is this successful?• Involvement with traditional healers - what issues are involved?• Home Care for non-HIV patients - is this important? how prevalent is this?• What are the major problems you encounter in your work?• What things are important in helping you do your job well?• What do you think is the major impact of the home care programme?• What are your suggestions for improvement of the programme?• What lessons have you learned which will help to plan for expandingthe programme?pg 89

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX IIStructure of Home Care TeamsNCHADS AIDS CARE UNITPROJECTCOMMITTEEMUNICIPAL HEALTHDEPARTMENTKILOMETRE 9HEALTH CENTRETEAM1pg 90V= COMMUNITY VOLUNTEERSHEALTH CENTREMANAGERSPhnom Penh Nov. 1999STRUCTURE OF HOME CARETEAMSKILOMETRE 6HEALTH CENTRESTUNG MEANCHEYHEALTH CENTREP'SAR DAM T'KOVHEALTH CENTRECHAMKAR MONHEALTH CENTREDAUN PENH HEALTHCENTREWAT MAHAMONTREY HEALTHTUOL KORK HEALTHCENTRETEUK K'LA HEALTHCENTREV V V V V V V V V VTEAM2TEAM3TEAM4TEAM5ATEAM5BTEAM6TEAM7TEAM8TEAM9PATIENTS AND FAMILIESCUHCAMARYKNOLLWOMEN from 20WORLD VISIONWOMENINDRA DEVIASSOCIATIONHOPE CAMBODIAWORLD VISIONNGOPROGRAMMEMANAGERS

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX IIILocation of Home Care Teams in Phnom PenhTEAM 1TEAM 2CSN DistrictCSTEAM 6TEAM 8CSCSCSTEAM 9TEAM 7TEAM S 5A and 5BCSTEAM 3TEAM 4N DistrictCSCSCSCSCSCSCSCSCSpg 91

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX IVRoles and Responsibilities of Home Care PartnersHome Care Teams• Identify patients to be visited• Receive referrals from community leaders, testing and counsellingcentres, health centres, hospitals, neighbours, other patients, monks• Conduct home care visits to patients and families• conduct assessments of physical needs of patient• conduct assessments of emotional and social needs of patientand family• show families and patients how to manage symptoms• prescribe medicine from the home care kit• help patients & families to understand about the illness• give information about HIV/AIDS• provide financial and material support, e.g. transportationcosts to hospital; food and soap powder• provide spiritual and psychological help to patient & family• respond to observed special needs, e.g. pregnancy, unsafe housing,children as carers, evidence of discrimination from community• record main points of visit including medication given• Refer (and if necessary accompany) patients to hospital, testing centre,clinic, other NGOs• Conduct IEC sessions on HIV/AIDS with local community, schools,factories, pagodas• Meet regularly with community leaders, monks, health workers,traditional healers• Support, train and manage a team of 5 Community Volunteers• Provide placements to others wanting to experience Home Care inpractice (government nurses; NGOs; donors)• Act as an advocate for PLHA and their familiespg 92• Facilitate groups for PLHA• Help patients to plan for the future, including orphan care

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaTeam Co-ordinators• Provide day-to-day supervision of team activities• Produce monthly reports on HCT activities• Represent team at monthly meetings• Select and support 5 community volunteers• Delegate responsibilities within the team• Ensure home care kits are maintained• Act as a focal point for communication between HCT andHome Care Co-ordinator, NGO, KHANA, etcHome Care Co-ordinator• Provide overall coordination of Home Care Network in Phnom Penh• Support Team Coordinators and chair monthly Team Coordinator Meeting• Summarise HCT monthly reports and present at monthlyHome Care Meeting.• Chair and produce minutes for monthly HC Meetings. Ensure importantissues are raised and discussed• Write monthly schedule for supervision and medical consultation;inform supervisors and record feedback• Perform monthly supervisory visits to Teams• Act as a link between Home Care activities in Phnom Penhand other provinces• Procure, record and distribute Home Care Kit materials• Act as key informant on Home Care for PWAKHANA NGO Partners with HCTs (4 NGOs with 7 teams)• Develop project proposal based on community needs assessment• Select team of 3 full-time NGO staff, 2 half-time government staff• Provide overall management of Home Care activities, includingprogramme budget, monitoring and evaluation• Ensure Team Coordinator produces accurate monthly reportspg 93

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia• Represent NGO at monthly Home Care Meeting, and participate in problemsolving and Home Care development• Participate in team /clinical supervision and help maintain quality standardsof Home Care• Provide quarterly programme and financial reports to KHANAHealth Centres (9)• Provide 2 half-time staff for HCT• Keep up to date with HCT activities and promote appropriate use of theservice• Represent Health Centre Managers at monthly Home Care Meetings, andparticipate in problem solving and Home Care development• Participate in team /clinical supervision and help maintain quality standardsof Home CareMunicipal Health Department• Disburse Government HCT member salaries• Keep up to date with HCT activities and promote appropriateuse of the service• Represent Municipal Health Department at monthly Home Care Meetingand participate in problem solving and Home Care development• Participate in team /clinical supervision and help maintain quality standardsof Home CareHospitals & Testing Centres• Refer patients as appropriate• Receive referrals from HCT• Participate in clinical supervision of HCTspg 94

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaKHANA• Support appropriate capacity building activities of partner NGOs• Provide technical support to partner NGOs (care & support, projectdesign, community needs assessment, participatory review, developingindicators, behaviour change communication, external relations, finance& management) through workshops, office & field visits.• Provide funds for partner NGOs with HCTs and disburse on quarterly basis• Facilitate exchange visits with other partner NGOs• Participate in monthly Home Care meetingsWorld Vision (3 teams)• Fund and manage their Home Care Teams• Select 3 teams of 3 full-time NGO staff, 2 half-time government staffand 5 volunteers• Provide overall management of Home Care Team activities, includingprogramme budget, monitoring and evaluation• Ensure Team Co-ordinator produces accurate monthly reports• Represent NGO at monthly Home Care Meeting, and participate inproblem solving and Home Care development• Participate in team /clinical supervision and help maintain qualitystandards of Home Carepg 95

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX VKHANA Technical SupportIn addition to monitoring the work of partner NGOs to check progress againstagreed workplans and budgets, Khana provides both technical support andorganisational capacity building. Khana employs different mechanisms forproviding technical support to partners. These include:- One-to-one programme-related field visits for direct observation of work, to assist staffto discuss any difficulties in implementation and help them to find appropriate solutions.Home Care Teams receive on average 2 field visits from Khana programme staffper quarter.- One-to-one finance-related field visits to build capacity in financial management arecarried out on average twice per year by Khana finance and admin staff.- Collective technical support through regular workshops. In 1999, Home Care staffparticipated in a total of 3 workshops including Basic or Advanced Counselling;Community Management of HIV; Appropriate Prescribing and Physiotherapy forPain Relief. Workshops to build organisational capacity included Project Reviewand Project Design.- NGO exchange visits whereby Khana supports staff from one project to visit andwork with staff from another. In relation to Home Care, this has been a particularlyuseful strategy for helping the staff from the pilot projects in Battambang buildtechnical capacity.- Participation in supervision of the Phnom Penh Home Care Network. The KhanaProgramme Officer for Care and Support visits different Home Care Teams oncea month to provide clinical and managerial guidance to Home Care staff.- Participation in Home Care Network monthly coordination meetings, providingongoing advice and guidance on addressing problems as they arise.- Sharing lessons learned through adaptation, translation and dissemination of relevantmaterials from the Alliance and other organisations, and through Khana documentingand sharing local experience. For example, the Khana booklet on appropriateprescribing of medications often used in home care, the quarterly information-sharingnewsletter Bo Krohom (Red Ribbon), and a pack of commonly asked questions andanswers on HIV prevention have been widely distributed.- Supporting partners to participate in and share their work with wider forums atconferences and on study tours. For example, Khana assisted three NGO partnersto have abstracts accepted for the global conference on AIDS this year.- Khana itself receives on-going technical support from the Alliance in the form ofinternational and local consultants and 2 resident advisors - one specifically buildingcapacity in care and support.Khana is currently expanding it's own capacity to provide technical supportby training other local providers and creating a resource pool of specialisedskills.pg 96

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX VIList of Key Informants Interviewed During the EvaluationDr Nhep AngkeabosDr Jeffrey AshleyDr Nhek BunchhupDr Chhe BunthouMs Lucy CarterMr Lang ChantholDr Chantha ChakDr Hak ChanrouernMs Khun ChanthaDr Janet CornwallMr Mony DaraMs Dominique DumoulinsDr Bernard Fabre-TesteMs Michelle FontanaMr Philippe GiraultMr Peter GodwinDr Mam Bun HengDr Nong KanaraMr Yee KimlengDr Lo Veasna KiriMs Men KosalDr Hor Bun LengMs Fabienne LopezMs Nhim MalaMr Geoff MantheyMr Chea MongkolDr Kong Bun NavyDr Song NgakFr Jim NoonanDr Sok PhanDr Bill PiggottDr Phouy Sona RothDr Sour SalanMs. Hou SamyDr Chhim SarathMr Chea SarithMs Kim SaroeunDr Meas SarunMs Son SedaDr Hy SeilarithMs Tilly SellersDr Chhin SenyaDirector, Chamcarmon Health CentreHealth & Population Director, USAIDVice Director DoH, BattambangSTD/AIDS Programme Manager, MHDClinical Management Advisor, SSCHome Care Team Co-ordinator, Phnom PenhProject Management Specialist, USAID(HIV) Physician, Medicin B, Calmette HospitalHome Care Team Co-ordinator, Phnom PenhTB/HIV Specialist, ServantsHome Care Team Co-ordinator, Phnom PenhHome Care Specialist, WHOPublic Health/Epidemiologist, French Co-operationRepresentative, MSF, BattambangBCI/Evaluation Officer, FHI/ImpactWorld Bank Advisor to NCHADSSecretary of State, MoHHead of AIDS Care Unit, NCHADSHome Care Team Co-ordinator, Phnom PenhDeputy Director, Dept of Planning, MoHHome Care Team Co-ordinator, Moung RusseyDeputy Director NCHADSFormerly WHO AIDS CareHome Care Team Co-ordinator, Phnom PenhCTA, UNAIDS, CambodiaHome Care Team Co-ordinatorPhysician, HIV/AIDS Dept, Centre of HopeTechnical Officer, FHI/ImpactManager Maryknoll HIV ProgrammePhysician, Centre of Hope Sihanouk HospitalRepresentative, WHO CambodiaAIDS Specialist, Battambang Provincial HospitalDeputy Director, Municipal Health DepartmentHome Care Team Co-ordinator, Phnom PenhKHANAPresident, WOMENHome Care Team Co-ordinator, Phnom PenhNGO Coordinator, MHDHome Care Team Co-ordinator, Phnom PenhDirector, Daun Penh Health CentreTechnical Advisor, International HIV/AIDS AllianceHead of Infectious Disease Ward,Norodom Sihanouk Hospitallist continues overleaf...pg 97

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaDr Oum SopheapMs Pan SopheapMr Uy Chhan SothyDr Samreth SovannarithMs Francesca StuerDr Veng ThaiDr Oum VannaDr Lay VicheaDr Mean Chhi VunDr Ong YanDr Mel YuongDr YousangMs Henrietta WellsProject Manager, World VisionHome Care Team Co-ordinator, Phnom PenhHIV/AIDS Coordinator, Indradevi AssociationHome Care Coordinator, AIDSCare Unit, NCHADSCountry Director, FHI/ImpactDirector, Municipal Health DepartmentDirector, Moung Russey District HospitalCoordinator, Provincial AIDS Office, BattambangDeputy Director MoH; Director NCHADSDirector, Psar Deum Tkov Health CentreDep Chief of PAC; Chief PAS, BattambangDeputy Director Battambang Provincial HospitalTechnical Advisor to Khana, International HIV/AIDSAlliance and former WHO Project Coordinatorpg 98

An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in CambodiaAPPENDIX VIIReferencesAIDS Action, May 1996. "Home and Hospital"Bunna S and Myers CN "Estimated Economic Costs of AIDS in Cambodia", UNDP, 1999Cost and Impact of Home-Based Care for People Living with HIV/AIDS in Zambia, 1994Foster, G et. al. (1999) Increased scope and decreased costs of home care.SAfAIDS News, Vol 7 No.3Gilks et al. "Care and Support for People with HIV/AIDS in Resource-Poor Settings", 1998Joint Ministry of Health/NGO Pilot Project on Home and Community Care for People withHIV/AIDS, Cambodia, February 1998-February 1999.Hansen, K et.al (1998) The cost of home-based care for HIV/AIDS patients in Zimbabwe.AIDS Care, Vol 10, No.6.Lee, T (1999) Cost and cost-effectiveness of home care: Zimbabwe experience, SAFAIDSMinistry of Health, 1998, The demand for health care in Cambodia: Concepts for futureresearch, National Public Health and Research InstituteMinistry of Health/NCHADS/MoH, 1999, Report on Sentinel Surveillance in CambodiaMinistry of Health/NCHADS/MoH National Strategic Plan STD/HIV/AIDS, Prevention and Carein Cambodia, 1998-2000Ministry of Health/NCHADS Draft Strategic Plan for HIV/AIDS and STI Prevention and Care inCambodia, 2001-2003Ministry of Health, Consensus Workshop on HIV/AIDS in Cambodia, Phnom Penh, 1999Osborne et al. "Models of care for patients with HIV/AIDS". AIDS 11, 1997Quality of Life Research; 1997, Vol6:572-584 "Psychosometric validation of the revisedFunctional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of lifeinstrument"UNAIDS (2000) Country Profile, "The HIV/AIDS/STD situation and the national response in theKingdom of Cambodia", 3rd Edition - February 2000Woelk G et.al. (1997) Do we care? The cost and quality of home based care for HIV/AIDSpatients and their communities in Zimbabwe, University of Zimbabwe, SAfAIDS, Ministry ofHealth & Child Welfare, Hararepg 99

International HIV/AIDS Alliance2 Pentonville RoadLondon N1 9HFUnited KingdomTelephone: +44 20 7841 3500Fax: +44 20 7841 3501E-mail: mail@aidsalliance.orgWith the support of the United StatesAgency for International Development.Please note that the opinions expressed in this report reflect only theviews of the evaluation team and the evaluation participants.