Journal of Health Care for the Poor and Underserved NATIONALEDITORIALBOARD ABDELMONEMA.AFIFI,Ph.D.,ProfessorofBiostatistics,SchoolofPublicHealth,Centerfor Health Sciences, University of California, Los Angeles, CA MARYASHLEY,R.N.,M.P.H.,Director,CenterforCommunityandPreventiveMedicine,Rancho Domingus,CA CARLC.BELL,M.D.,PresidentandChiefExecutiveOfficer,CommunityMentalHealthCoun- cil, Chicago, IL DANIEL S.BLUMENTHAL,M.D.,M.P.H.,ProfessorandChairman,DepartmentofCommu- nity Health and Preventive Medicine, Morehouse School of Medicine, Atlanta, GA ROBERTN.BUTLER,M.D.,FoundingPresidentandChiefExecutiveOfficer,InternationalLon- gevity Center, New York Academy of Medicine, New York, NY WILLIAMA.DARITY,Ph.D.,ProfessorEmeritus,SchoolofPublicHealth,UniversityofMassa- chusetts, Amherst, MA VANESSANORTHINGTONGAMBLE,M.D.,Ph.D.,VicePresident,DivisionofCommunity and Minority Programs, Association of American Medical Colleges, Washington, DC M.ALFREDHAYNES,M.D.,M.P.H.,DeputyDirector(retired),CharlesR.DrewUniversityof Medicine and Science, Los Angeles, CA SUSANJENKINS,Ph.D.,R.N.,SeniorProgramOfficer,HitachiFoundation,Washington,DC EDITH IRBYJONES, M.D., Past President, National Medical Association, Houston, TX WILBERTC.JORDAN,M.D.,M.P.H.,MedicalDirector,OasisClinicandAIDSProgramand AIDS Institute, Martin Luther King/Drew Medical Center, Los Angeles, CA ROSALYNC.KING,Pharm.D.,M.P.H.,Director,OfficeofInternationalPrograms,Schoolof Continuing Education, Howard University, Silver Spring, MD LaSALLED.LEFFALL,M.D.,Professor,DepartmentofSurgery,HowardUniversityHospital, Washington, DC ROBERTG.ROBINSON,M.S.W.,Dr.P.H.,AssociateDirectorofProgramOperations,Officeon Smoking and Health, Centers for Disease Control and Prevention, Atlanta, GA WILLIAMA.ROBINSON,M.D.,M.P.H.,ChiefMedicalOfficerandDirector,CenterforQuality, Health Resources and Services Administration, Rockville, MD VICTORW.SIDEL,M.D.,DistinguishedUniversityProfessorofSocialMedicine,Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY RUEBENC.WARREN,D.D.S.,M.P.H.,Dr.P.H.,AssociateDirector,UrbanAffairs,Agencyfor Toxic SubstancesandDiseaseRegistry,DepartmentofHealthandHumanServices,At- lanta,GA Official Publication of Meharry Medical College TheJournalofHealthCareforthePoorandUnderservedreceiveda1992AwardofDistinctioninthe 22ndAnnualAwardsforExcellenceProgram,sponsoredbytheAssociationofAmericanMedicalCol- leges’Group on Public Affairs. Journal of Health Care for the Poor and Underserved Volume 12, Number 4 • November 2001 Journal of Health Care for the Poor and Underserved Volume 12, Number 4 • November 2001 Brief Communications Circle of Care: 381 Beyond HIV Counseling and Testing CAROLA. PATSDAUGHTER,PhD,RN,ACRN CATHERINE O’CONNOR,MSN,RN,ACRN CECELIAGATSON GRINDEL,PhD,RN PAULO TAVEIRA,MDIV MICHAELA. MANCUSI,MSW,LICSW Voices of Immigrant South Asian Women: 392 Expressions of Health Concerns JOAN L. BOTTORFF,RN,PhD JOYL. JOHNSON,RN,PhD LISAJ. VENABLES,RN,BSc,MSN SUKHDEV GREWAL,RN,BSN NELEENAPOPATIA,RN,MSN B. ANN HILTON,RN,PhD HEATHER CLARKE,RN,PhD PAULINE SUMEL,RN,BSN SONIABILKHU,BA GURPALSANDHU,RN,PhD Original Papers Access to and Use of Ambulatory Health Care 404 by a Vulnerable Mexican American Population on the U.S.-Mexico Border MICHAELPARCHMAN,MD THERESABYRD,RN,DrPH Behaviors, Attitudes, and Knowledge of Low-Income 415 Consumers Regarding Nutrition Labels LAURAH. MCARTHUR,PhD,RD VALERIE CHAMBERLAIN,PhD ALAN B. HOWARD,MS Whether and Where Community Health 429 Center Users Obtain Screening Services KEVIN D. FRICK,PhD JERRILYNN REGAN,RN,MS,MPA Low-Income Californians’ Experiences 446 With Health Insurance and Managed Care LISAI. BACKUS,MD,PhD ANDREW B. BINDMAN,MD Health Insurance Coverage-Enrollment 461 and Adequacy of Prenatal Care Utilization VILMACOKKINIDES,PhD Perspectives of Low-Income African Americans 474 on Syphilis and HIV: Implications for Prevention JEBOSE O. OKWUMABUA,PhD VINCENT GLOVER,MBA DELOIS BOLDEN,BA SHERON EDWARDS,BS Impact of a Personal Response System 490 on Hospital Use by Low-Income African American and White Elders BRENDAF. MCGADNEY-DOUGLASS,MSW,PhD Effectiveness of Reminder Systems 504 on Appointment Adherence Rates SUSAN MAXWELL,RN,MBA ROSE MALJANIAN,RN,MBA SHERYLHOROWITZ,PhD MARYANN PIANKA,APRN,MHSA YOLANDACABRERA,BA JOHN GREENE,MD Acknowledgment of Peer Reviewers 515 Information for Authors 518 About the Institute 522 In the Next Issue 522 Readers’Services 523 Index to Volume 12 524 Subject Index 524 Author Index 526 Sage Publications Thousand Oaks • London • New Delhi Brief communication 381 CPairtcsldea oufg Chaterre et al. CIRCLE OF CARE: BEYOND HIV COUNSELING AND TESTING Overview ManyHIVcounselingandtestingprogramsdonotlinkbothseropositive andseronegativeindividualswithcomprehensiveservicesafterHIVtesting. East Boston Neighborhood Health Center implements HIV counseling and testinginfourprograms:(1)aconfidentialprogramforexistingclients;(2)an anonymous test site serving inner-city residents; (3) a mobile unit serving courts,methadoneclinics,andsubstanceabuseprograms;and(4)ascreening clinicforimmigrants.Thispaperpresentscounselingandtestingdatafrom theseprogramsfortwoperiods.Inaddition,dataonreferralsforbothsero- positive and seronegative individuals from the anonymous test site and mobileunitarereported.Personalizedreferralsensurethatnewlyseroposi- tiveindividualsareimmediatelyengagedincomprehensiveHIVcare.Refer- ralsforindividualswithhigh-riskbehaviorshelpmaintaintheirHIVnegative statusaswellaspromoteearlyHIVdetectionandintervention.Inaddition, referralsthatextendtofamiliesandsocialnetworkscompletethecircleofcare. Background TheriskofHIVinfectionisparticularlyhighamongsuchgroupsasinject- ing drug users and their sex partners, sex workers and their partners, men who have sex with men but are not gay identified, and minority women. Althoughcounselingandtestingservicesareavailableinmostcommunities toreachthesehigh-riskgroups,1,2mostprogramsdonotlinkbothseropositive andseronegativeindividualswithcomprehensivehealthcareservicesafter HIVtesting.Forsome(e.g.,insuredpersonswhohaveaprimarycareprovider orpersonswithadequatefinancial,material,andsocialsupports),theselink- ages may be unnecessary. However, disenfranchised populations may lack resourcesandbeunabletoadvocateforthemselvestoobtainhealthcareand social services. In addition, marginalized persons may be inhibited from accessing care because of past negative experiences with bureaucratic sys- tems. The advantages of linking seropositive individuals to health care ser- vicesincludeprovisionoftreatmentandpreventionofnewinfection.Theless obviousbutequallyimportantreasonsforengagingseronegativeindividuals intocareincludeongoingopportunitiesforHIVeducationaswellasestab- lishing a safety net for early detection and intervention in the event that Received October 1, 1999; revised April 1, 2001; accepted June 6, 2001. JournalofHealthCareforthePoorandUnderserved • Vol.12,No.4 • 2001 382 Circle of Care infectiondoesoccur.Thepurposeofthispaperistwofold:(1)toreportHIV counseling and testing data from four community-based programs at one inner-cityhealthcenterand(2)todescribetypesofreferralsfromtwoofthese programs to health and social services needed by seropositive and seronegative persons who are generally not engaged in care. HIVcounselingandtestingprogramsexistinmanycommunitiesthrough- outtheUnitedStates.Thestructureoftheseprogramsvaries.Someprograms focusonlyoncounselingandtesting,whileothersprovideparticipantswith an educational program on HIV prevention.3 Most of these programs have beenhousedinsinglelocationsorhavefocusedonsinglepopulations.4-10In someinstances,counselingandtestingprogramshavebeentakentocommu- nitysettingstoaccesshard-to-reachpopulations.3,11Theeffectivenessofedu- cation,counseling,andtestingprogramsinreducingriskbehaviorsforHIV infection has been documented.12-19 Two goals for these programs are clear. The ultimate goal is the prevention of HIV infection. Secondarily, when an HIVdiagnosisismade,personslivingwithHIV/AIDS(PLWHIVs)arelinked toHIVhealthcareservices.UnderstandingtheneedsofPLWHIVsandlinking themwithservicesareessentialtopromotingincreasedsurvivalandahigh levelofwellness.ThevaryingneedsofPLWHIVsreceivingcareindifferent settings (e.g., home care, hospital, outpatient clinics, long-term care) have been compared.20 The independent effects of demographics and socioeco- nomic variables on unmet needs for HIV-related services have been exam- ined.21 Solomon and colleagues reported on the use of health services in a cohortofintravenousdruguserswithknownHIV-1serostatus.22Caseman- agementmodelshavebeenusedtolinkPLWHIVswithhealthcareandsocial services.23-29SpecialprogramshavebeenestablishedtolinkcertainAIDSpop- ulationswithservices.Forexample,theWell-BeingInstituteinDetroit,Michi- gan, seeks out multiple-diagnosed women living with HIV/AIDS, “hyperlinking”themintocare.30ThefocusoftheseprogramshasbeenHIV- seropositive persons. Seronegative individuals who may have emergent health care and/or socialneedsdonotroutinelyreceivereferralsfromHIVcounselors.Krauss andcolleaguesemphasizedtheimportanceofmeetingtheneedsofanyindi- vidualwhorequiresservices.31Theclient’sprimaryneeds(i.e.,housing,food, drugtreatment,etc.)shouldbeaddressedfirst.Anextensivereferralnetwork for services can ensure that the client’s needs are met. Twoteamsofinvestigatorsdidreportonprovidingservicestopersonspar- ticipatinginmethadonetreatmentprograms.Selwynetal.describedonsite health care services provided to seronegative and seropositive individuals whowereinamethadonetreatmentprogram.32Theinvestigatorsconcluded thathighratesofacceptanceandcompliancewithchronicmedicalregimens forPLWHIVsandseronegativeindividualsarepossibleamongintravenous drug users in a methadone maintenance program. In a 1993 report, Selwyn andcolleaguesnotedthatonsiteprimarymedicalcareserviceswerereadily andfrequentlyusedbyPLWHIVsandseronegativepersonsinamethadone Patsdaughter et al. 383 BOX 1 CASE STUDY Larryisa45-year-oldAfricanAmericanwithseverecardiomyopathyfromyearsofal- coholandIVdrugabusewhobecameknowntothestaffofamobileHIVcounselingand testingunit(MU)inatherapeuticresidentialcommunity.Larrytestedandwasinformed thathewasHIVpositive.Larrythoughthecould“livewithHIVforyears”andwasmore immediatelyconcernedabouthisheartdisease.Hisinitialconcernsincludedaccessing homeoxygenandahospitalbedaswellasnutritionalsupplementsandtaxivouchersfor transportation to his cardiology appointments. Referrals to meet these needs were ar- rangedbyMUstaff.However,LarryrefusedreferraltoHIVspecialtyservicessincethey wereavailableintheagencywherehiscardiologistpracticed.Hesaid,“Myheartdoctor canhelpmewiththatproblem.Shedoeseverythingelse.”Duringthenextencounterwith Larry3weekslater,theMUnurselearnedthathewasprescribedmanycardiacmedica- tionsaswellassuboptimalantiretroviraltherapywithwhichhewasnonadherent.Arefer- ralwasmadeforHIVspecializedhomecaretoassisthimwithmedicationadherenceand foradvocacywiththecardiologistforappropriateHIVmanagement.Almost4months later,LarryagaincontactedtheMUnursetoinformherthathiscardiologisthadmoved andthathewouldnowconsiderreferraltoHIVservices.Thus,acircleofcarebeganwith counseling and testing in the mobile unit. maintenanceprogram.33PersonswhowereHIV-seropositive(n=212)made morefrequentvisitsthanthosewhowereseronegative(n=264)(meanannual visits 8.6 versus 4.1, p < 0.001). In this situation, primary care services were provided onsite to persons receiving treatment for intravenous substance abuse.Theavailabilitytoanduseoftheseservicesbypatientsoncetheycom- pleted the methadone maintenance program were unclear. Dennis, Karuntozos,andRachalalsoreportedsuccessinlinkingmethadoneclientsto community resources through case management.34 Seropositive and seronegativeindividualswerelinkedtoservicestomeetsocialandpsycho- logicalneeds(e.g.,vocationalassessments,jobpreparation,supportservices, etc.).Referralsformedicalserviceswerementionedbutnothighlighted.The investigatorsconcludedthatsupportservicestoaddresslogisticalproblems suchasemployment,transportation,childcare,andmedicalcareshouldbe available to methadone clients in treatment programs. Inbothofthesituationsdescribedabove,referralserviceswereprovided by health care providers involved in methadone maintenance, limiting the availability of services to those in drug treatment programs. In these pro- grams,theclientself-referredandidentifiedhisorherneeds.Theuseofindi- vidualclientassessmenttoinitiateclientreferralswasnotaddressed.Finally, onlytheclientwasreferredforservices.Frequently,thewell-beingoftheclient is intimately linked to the welfare of family members, but family referrals were not addressed. HIV education, counseling, and testing programs that serve disenfranchised populations and link seropositive and seronegative individualsandfamilieswithcomprehensivehealthcareandsocialservices can make a difference in the well-being of participants. 384 Circle of Care The East Boston Neighborhood Health Center TheEastBostonNeighborhoodHealthCenter(EBNHC),thefourthlargest healthcenterintheNortheast,servesaworking-classcommunityofdiverse ethnicorigins.EBNHCisseparatedfromBostonanditsmajormedicalcenters byaharborandtunnel,whichactasbothphysicalandpsychologicalbarriers forinhabitantsofthisneighborhood.Thesebarrierswereoneofthereasons forestablishingcommunity-basedHIVservicesin1989.Currently,HIVSer- vicesdeliverscounselingandtestingthroughfourprograms:(1)aconfiden- tialwalk-inprogramforexistinghealthcenterclients,(2)ananonymoustest site(ATS)servinginner-cityresidentsinthehealthcentercatchmentarea,(3)a mobileunit(MU)servingsevensiteswithclientswithhigh-riskbehaviorsfor HIV/AIDS,and(4)ahealthscreeningclinicfornewimmigrants.Asshownin Table 1, these programs have been very successful in providing counseling andtestingservicestoinhabitantsofeastBostonandsurroundingcommuni- ties. Counseling and testing data for two time periods are presented: time period 1 was from October 1, 1996, through September 30, 1997, and time period 2 was from October 1, 1997, to September 30, 1998. AsshowninTable1,atotalof970personswerecounseledintimeperiod1, and967electedtobetestedinallfourprograms.Nineteen(1.96percent)tested HIVpositive,comparabletothestateofMassachusetts’soverallaverageof2 percent.35Intimeperiod2,atotalof714personselectedtobetested,and12 testedpositive(1.68percent).Decreasedcounselingandtestingfiguresintime period 2 may reflect, in part, (1) changes in health center staffing, which diminishedreferralstotheConfidentialProgramforhealthcenterclients,and (2) reduction in service delivery at the Immigration Clinic, with referral of immigrantstoaprivate,for-profitclinicforexpeditedresults.Theprogram withthehighestnumberscounseledandtestedduringbothtimeperiodswas theATS.Duringtimeperiod1,theprogramwiththehighestseroprevalence wastheMU;however,thisfiguredecreasedduringtimeperiod2duetorepeat admissionstoprogramssites(i.e.,outpatientsubstanceabuseandmethadone maintenance). Finally, the majority of referrals came from the MU. SincetheATSandtheMUserveindividualswhoaregenerallynotengaged inprimarycareservices,thispaperwillfocusonthereferralsmadethrough them.TheATSisananonymous,free,walk-inclinicheldfortwo3-houreve- ningsessionsaweek.ThesevensitesservedbytheMUincludetwodistrict courts,twomethadonemaintenanceclinics,andoneresidentialandtwoout- patientsubstanceabusetreatmentprograms.Inthecourtsystem,sexworkers and their clients, first-time perpetrators of domestic violence, and drug- relatedoffendersaremandatedtoattendHIVeducation,counseling,andtest- ing sessions. TheobjectivesoftheATSandtheMUaretoprovide(1)riskreductionand behavior change strategies through individual sessions or group format, (2)anonymousandconfidentialHIVcounselingandtestingusingguidelines from the Massachusetts Department of Public Health HIV/AIDS Bureau,36 Patsdaughter et al. 385 TABLE 1 NUMBERS OF INDIVIDUALS COUNSELED, TESTED, AND IDENTIFIED AS HIV POSITIVE IN EAST BOSTON NEIGHBORHOOD HEALTH CENTER’S FOUR PROGRAMS DURING TWO TIME PERIODS TIME PERIOD 1: OCTOBER 1, 1996, THROUGH SEPTEMBER 30, 1997 COUNSELED TESTED POSITIVE PERCENTAGE Confidential program 198 195 3 1.54 Anonymous program 504 504 7 1.39 Mobile unit 106 106 6 5.66 Immigration clinic 162 162 3 1.85 Total 970 967 19 1.96 TIME PERIOD 2: OCTOBER 1, 1997, THROUGH SEPTEMBER 30, 1998 COUNSELED TESTED POSITIVE PERCENTAGE Confidential program 79 78 4 5.13 Anonymous program 493 477 3 0.63 Mobile unit 132 131 3 2.29 Immigration clinic 28 28 2 7.14 Total 732 714 12 1.68 and(3)linkstoawiderangeofhealthandsocialservices,includingcompre- hensiveHIVservices,primarycare,specialtymedicalcare(e.g.,dermatology, gynecology,ophthalmology,pulmonaryclinic),mentalhealthservices,dental services, substance abuse treatment, health insurance enrollment, and transportation. TheATSandtheMUarestaffedbyadirector,coordinator,threecounselors, andvolunteersandserveasclinicaltraininglocationsformedicalandnursing students.IntheATSprogram,individualsself-referforone-on-oneHIVrisk assessment, counseling, and testing. An average counseling session lasts approximately30minutes.StaffpresenttheHIVeducation,counseling,and testingprogramonaregularlyscheduledbasisateachoftheMUsevensites. TheMUprogramusesagroupmodelthatincludesa11 houreducationalses- 2 sion. Following the educational presentation, individuals opting to test receive a 30-minute one-on-one counseling and testing session. Two weeks followingthepresentation,staffmembersreturntothesitetoinformpartici- pantsoftheirHIVstatus.Adescriptionofprogramdevelopment,thegeneral model,andsite-specificmodificationshavebeenpublishedpreviously.3ATS andMUstaffconductindividualizedintakeassessmentsforbothseropositive and seronegative clients requesting assistance. Referrals are made to 386 Circle of Care appropriateprimarycareandsocialservicesbothattheparenthealthcenter andthroughoutthemetropolitanarea.Staffalsolinkfamilymembersand/or membersofparticipants’socialnetworkswithservicesasneeded.Thus,acir- cle of care is created that extends beyond HIV counseling and testing. Health and social service referrals for seropositive individuals are pre- sentedinTable2.Duringtimeperiod1,all19seropositiveindividualswere referredtoHIVservices,withallbutone(94.7percent)keepingtheirinitial primarycareappointment.Inaddition,33referralsweremadeforspecialty medicalcare,15formentalhealthservices,7fordentalservices,6forhealth insurance,and3forsubstanceabusetreatment,foratotalof83referrals;the healthcentertrackingsystemindicatedfollow-throughfor80(96.34percent) of the initial appointments. Duringtimeperiod2,all12seropositiveindividualswerereferredtoHIV services, with all but one (91.7 percent) keeping their initial primary care appointment. Fifteen referrals were made for specialty medical care, 6 for mentalhealthservices,7fordentalservices,7forhealthinsurance,and1for substanceabusetreatment,foratotalof48referralswitha97.9percentfollow- throughrate.Noreferralsweremadetourgentcareforseropositiveindividu- alsatthetimeofintake;rather,theclientswereinitiallyseenbyHIVservices. Referrals were also made for other services for seropositive individuals, includingbutnotlimitedtonutritionalservices,homecare,HIV-specificedu- cation, needle exchange programs, and transportation services; however, therewasnosystemavailablefortrackingreferralstoagenciesandservices outside of the health center. ReferralsforseronegativeindividualsarealsopresentedinTable2.Refer- ralsweremadeforatotalof48individualsbetweenOctober1,1996,andSep- tember30,1997.Ofthesereferrals,18wereforprimarycare,49forspecialty medicalcare,25formentalhealthservices,4fordentalservices,6forhealth insurance,and1forsubstanceabuse,foratotalof103referrals.Noadditional referralsforsubstanceabusetreatmentweremadebecausemanyparticipants were from MU sites where clients were already receiving substance abuse care.Allhealthcarereferralsweremadeatthetimeofintakeforseronegative patients.Mostofthesepatientshadacuteorpressingmedicalconcernsattheir first encounter with MU staff. Duringtimeperiod2,referralsweremadefor71seronegativeindividuals. Fifty-sixreferralswereforprimarycare,37forspecialtymedicalcare,24for mental health services, 8 for dental services, 12 for health insurance, 13 for urgentcare,and1forsubstanceabusetreatment,foratotalof151referrals.It might be postulated that different trends in time periods 1 and 2 could be explained, in part, by the fact that the program became more firmly entrenchedinthecommunityandwasseeingincreasingnumbersofhomeless anduninsuredpersons.Sinceseronegativeindividualswerenotadmittedto HIVservicesattheparenthealthcenter,itwasnotethicallyorlogisticallypos- sibletotrackfollow-throughforeitherinitialappointmentsorrepeatvisits.