EXAMINING THE HIV/AIDS CASE MANAGEMENT PROCESS.

EXAMINING THE HIV/AIDS CASE MANAGEMENT PROCESS. Eight themes in the HIV/AIDS case management process emerged from a1998 study of 14 Ryan White Ryan Wayne White (December 6, 1971 – April 8, 1990[1]) was a young man with AIDS from Kokomo, Indiana who became a national spokesman for AIDS, after being expelled from school because of his infection. Title I- funded case management programs inthe New York City New York City:see New York, city. New York CityCity (pop., 2000: 8,008,278), southeastern New York, at the mouth of the Hudson River. The largest city in the U.S. tri-county region. For individuals who were strugglingwith multiple environmental stressors, the diagnosis of HIV HIV(Human Immunodeficiency Virus), either of two closely related retroviruses that invade T-helper lymphocytes and are responsible for AIDS. There are two types of HIV: HIV-1 and HIV-2. HIV-1 is responsible for the vast majority of AIDS in the United States. or AIDS wasmerely one of the many pressures that brought them to case managementprograms. Most came when they were in crisis. Using both chart reviewsand focus groups with case managers and supervisors, this articlereports that the activities that characterize this region's casemanagement introduce alternative ways of thinking about the HIV/AIDScase management process. Key words case management chart reviews focus groups HIV/AIDS As case management has become a critical intervention strategy forservices to vulnerable individuals and populations that are at greatrisk (Raiff & Shore, 1993; Rothman, 1994), people infected in��fect?tr.v. in��fect��ed, in��fect��ing, in��fects1. To contaminate with a pathogenic microorganism or agent.2. To communicate a pathogen or disease to.3. To invade and produce infection in. with HIVand AIDS and affected by the disease, such as children and parents,spouses and partners, also have been targeted for case management(National Commission on AIDS, 1991). Like other vulnerable populations,people with HIV/AIDS require a network of formal and informal supportsand services for optimal functioning and well-being. Many can extendtheir survival and enhance their quality of life if they can rely on asupportive environment. Yet, these supports frequently are inadequate,highly complex, and difficult to access (Gutheil & Chernesky, 1999). Use of services is complicated further for people with HIV andAIDS. For some, a diagnosis of HIV or AIDS brings people who have beenindependent into the service sector for the first time, often findingagencies that are unresponsive unresponsiveNeurology adjective Referring to a total lack of response to neurologic stimuli and even rejecting. Many individuals,reluctant to present at agencies where their lifestyles could becomeknown, delay seeking services to address their medical and health needsuntil confronted with unmanageable crises. Others, with extensive butdifficult experience with a service delivery system on which they dependfor financial assistance, find they must turn to it again for additionalsupport in meeting the complex and multiple HIV/AIDS-related medical,health, and social services social servicesNoun, plwelfare services provided by local authorities or a state agency for people with particular social needssocial servicesnpl → servicios mpl socialesneeds. Furthermore, gender (Poohkay, 1996),age (Emlet, 1993; Tenner, Feudo, & Woods, 1998), sexual orientation sexual orientationn.The direction of one's sexual interest toward members of the same, opposite, or both sexes, especially a direction seen to be dictated by physiologic rather than sociologic forces. (Martin & Knox, 1997), ethnicity and culture (Indyk, Belville,Lachapelle, Gordon, & Dewart, 1993; Poindexter & Linsk, 1999;Yeakley & Gant, 1997), and addictions (Falck, Carlson, Pri ce, &Turner, 1994; Schwartz, Dilley, & Sorensen, 1994) can act asbarriers to requesting and obtaining services for this population. Case management has been described as a "client-focusedprocess that augments and coordinates existing care services"(Sowell & Grier, 1995, p. 15) and involves advocacy and servicedevelopment. Case management programs are designed to provide peoplewith HIV and AIDS continuity of care by improving the quality of theirlives (Piette, Thompson, Fleishman, & Mor, 1993), ensuringappropriate individualized in��di��vid��u��al��ize?tr.v. in��di��vid��u��al��ized, in��di��vid��u��al��iz��ing, in��di��vid��u��al��iz��es1. To give individuality to.2. To consider or treat individually; particularize.3. medical plans (Chachkes, 1993), encouragingadherence to medical treatment (Schwartz et al., 1994), linking clientswith appropriate services to minimize the burden of HIV/AIDS onindividuals and their social networks (Piette et al., 1993), expeditingaccess to services. (Sonsel, Paradise, & Stroup, 1988), andcoordinating the range of services needed to maintain optimal physicaland social functioning social functioning,n the ability of the individual to interact in the normal or usual way in society; can be used as a measure of quality of care. (Chachkes, 1993). The rapid proliferation proliferation/pro��lif��er��a��tion/ (pro-lif?er-a��shun) the reproduction or multiplication of similar forms, especially of cells.prolif��erativeprolif��erous pro��lif��er��a��tionn. of case management programs resulted fromthe Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990(P.L. 101-381) legislation and its funding. Because the legislation didnot mandate services provisions, program models, or case managerqualifications, each locality 1. locality - In sequential architectures programs tend to access data that has been accessed recently (temporal locality) or that is at an address near recently referenced data (spatial locality). This is the basis for the speed-up obtained with a cache memory.2. could design its own services deliverysystem. HIV/AIDS case management therefore is offered through multiplemodels, by an array of auspices, in diverse settings, and throughprograms that vary considerably in the breadth and depth of theircomponents. Consequently, there is little consensus about what HIV/AIDScase management is, and describing HIV/AIDS case management as it ispracticed has become a research challenge (Chernesky & Grube, 1999;Grube & Chernesky, 1998; Indyketal., 1993; Piette, Fleishman, Mor,& Thompson, 1992; Sonsel et al., 1988). From its beginning, case management has been described by corefunctions or activities: intake, assessment, care or services planning,linkage with formal and informal resources, advocacy, and follow-up andmonitoring. Over the years these core functions have been elaborated onand refined. Consequently, the number of case management's corefunctions has grown from five (Rubin, 1992) to as many as 15 (Rothman& Sager, 1998). Although the number of functions and their names maychange, there continues to be a consensus on what case management is.There have been few proposals that challenge this functional descriptionor offer alternatives to it. Fiorentine and Grusky (1990) noted thatthere is likely to be a great deal of variation in the case managementrole because of structural constraints, client situations, and casemanager preferences and thus suggested a role-contingency approach. Wolkand his colleagues (1994) posited that case managers are actuallymanagers and suggested that case managers perform t he 10 managerialroles similar to all managers. This article presents the results of two studies that were part ofa research project with HIV/AIDS case management programs in atri-county region surrounding the New York City metropolitan area. Thearticle presents eight major themes that characterize the HIV/AIDS casemanagement process that emerged from the findings of chart reviews andfocus groups. The case management themes derived from this studyintroduce alternative ways of thinking about the HIV/AIDS casemanagement process. THE PROJECT The main purpose of this project was to provide empirically basedinformation and new insights about the HIV/AIDS case management processin the tri-county (Westchester, Rockland, and Putnam) region in New York New York, state, United StatesNew York,Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of State. Conducted by faculty at the Fordham University Fordham University(fôr`dəm), in New York City; Jesuit; coeducational; founded as St. John's College 1841, chartered as a university 1846; renamed 1907. Fordham College for men and Thomas More College for women merged in 1974. Graduate School ofSocial Service in 1998, under contract to the Westchester CountyDepartment of Health, the project coincided with plans of the Departmentand the Ryan White Steering Committee steer��ing committeen.A committee that sets agendas and schedules of business, as for a legislative body or other assemblage.steering committeeNoun to reissue re��is��sue?v. re��is��sued, re��is��su��ing, re��is��suesv.tr.To issue again, especially to make available again.v.intr.To come forth again.n.1. a request for proposals(RFP (Request For Proposal) A document that invites a vendor to submit a bid for hardware, software and/or services. It may provide a general or very detailed specification of the system. 1. (business) RFP - Request for Proposal.2. ) for Ryan White Title I-funded HIV/AIDS case management services.It was hoped that the data generated from the research, using three datasources (chart reviews, case manager and supervisor focus groups, and acase manager time study), would assist in formulating the RFP andensuring that the needs of the region's HIV/AIDS population wouldbe served (Grube & Chernesky, 1998). There are 14 HIV/AIDS Title I-funded case management programs inthis region, with 45 case managers (full- and part-time) servingapproximately 400 people infected and affected with HIV/AIDS who requiredifferent levels of case management. The funding process has encouragedflexible and innovative programming rather than required any one casemanagement model. Thus, the case management system consists of a rangeof models, sites, and provider auspices. It includes community-basedAIDS services organizations as well as medical or health facility-basedcase management programs. Case management is offered in drop-in centers,mobile vans, and health clinics. Programs may be either stand-alone orcolocated with other services such as meals, HIV testing, informationand referral, substance abuse counseling, and support groups. Casemanagers include individuals with advanced degrees. In general, programsuse a combination of professional and nonprofessional non��pro��fes��sion��al?n.One who is not a professional.nonpro��fes staff, althoughsupervisors and directors generally are pr ofessionally trained,primarily as social workers. METHOD This study used a process evaluation approach. Process evaluationis a type of program evaluation Program evaluation is a formalized approach to studying and assessing projects, policies and program and determining if they 'work'. Program evaluation is used in government and the private sector and it's taught in numerous universities. that provides information about programimplementation (Yegidis, Weinbach, & Morrison-Rodriguez, 1999) andcan be used to inform decisions about ways to improve a program soperations (Gabor, Unrau, & Grinnell, 1998). Although the focus ofprocess evaluation is typically on the way in which one programoperates, the focus of this research was on the operations of a group ofprograms in a specific region. Specifically, the study examined the wayin which case management services were implemented in the tricountyregion. The First Step--Chart Review Process evaluation generally involves secondary analysis of anexisting data set such as program records or logs (Yegidis et al.,1999). The first step in this study was a review of chart recordings tocollect information about case management activities and the ways inwhich these activities were implemented. A purposive pur��po��sive?adj.1. Having or serving a purpose.2. Purposeful: purposive behavior.pur sampling strategywas used to select six agencies considered to represent the existingregional case management delivery system and the range of casemanagement providers and services. Therefore the selected sites werediverse in geography (urban, suburban, and rural), agency setting(medical center, health-based facility, and community based), and casemanagement focus (substance abuse, food programs, medical issues, andspirituality). Agencies were contacted directly, first by the CountyHealth Department and then by the researchers who explained the purposeof the study and provided assurances regarding the confidentiality ofdata that would be reported in disguised or aggregate form only(Purcell, DeGroff, & Wolitski, 1998). All six agencies selectedagreed to participate. A purposive sampling strategy also was used in selecting a sampleof 10 charts from each agency. Agency directors were asked to discussthe purpose of the chart review with the staff and, as a group, selectseven charts that best illustrated the work being done by their casemanagers and what case management could accomplish and three charts thatbest illustrated the kind of challenges their case managers typicallyexperienced. This strategy was adopted as the most effective way ofobtaining a sample that would best illustrate the unique aspects of thecase management process as practice in the region, and, at the sametime, encourage organizational commitment to the research efforts.Consequently, the sample included considerable variations in HIV/AIDScase management practice among the 60 charts: closed and open cases,short- and long-term work, and multiple client presenting needs. Two researchers read each chart "blind" andindependently, using a data collection instrument to collect informationon "what case managers did," "what case managers actuallyaccomplished for clients," and "what obstacles seemed toaffect the case management process and outcomes." Once the reviewof the 10 charts from an agency was completed, the information wassummarized, themes were identified, and patterns that suggested anacross-the-board case management process were extrapolated. The resultsof this content analysis for each researcher were compared and combinedfor a picture of HIV/AIDS case management in the region, from theperspective of chart recordings. The Second Step--Focus Groups Because the picture did not fit easily into conventional thinkingabout case management, and mindful mind��ful?adj.Attentive; heedful: always mindful of family responsibilities.See Synonyms at careful.mind of the limitations of relying solelyon chart recordings that can disguise and distort the actual work beingdone, we reviewed the findings in a series of focus groups. Focus groupmethodology has been described as an effective technique for exploratoryresearch Exploratory research is a type of research conducted because a problem has not been clearly defined. Exploratory research helps determine the best research design, data collection method and selection of subjects. , and, in particular, a cost-effective technique for learningabout case management (Marcenko & Samost, 1999). Whereas chartreviews permitted an analysis of case management practice at the time itwas recorded, the focus groups were present-oriented and gave voice(Nichols-Casebolt & Spakes, 1995) to those who best know what casemanagers do and accomplish. In an attempt to be more inclusive of inclusive ofprep.Taking into consideration or account; including. the region's casemanagement programs and case managers than was possible with the chartreviews, all 14 of the existing HIV/AIDS case management programs wereinvited to send case managers and a program supervisor-director to oneof several 2 1/2-hour group sessions. A number of strategies were usedin an attempt to maximize participation. We discussed the purpose of thefocus group sessions with agency directors. Flyers, explaining thepurpose of the focus group sessions and ensuring confidentiality, weredistributed to all case managers and program supervisors. In addition,the importance of this step in the study was raised at the Ryan WhiteSteering Committee meeting. Slightly more than half of the programs, eight in total, chose toparticipate. Seventeen case managers attended a focus group, 10 in oneand seven in another group. Nine program supervisors participated in aseparate group session. Of the 17, almost one-third (six) were men, andonly six were either Hispanic or African American African AmericanMulticulture A person having origins in any of the black racial groups of Africa.See Race. . Slightly more thanhalf (five) of the case managers had an advanced degree in social work.Similarly, a majority of the program supervisors or directors were whitewomen, and a majority had advanced degrees as well as extensive casemanagement experience. We served as group leaders, having had experience conducting focusgroups, particularly as tools for program evaluation. At the beginningof each focus group session, we described the purpose of the focusgroup, and the "rules" governing procedures, includingconfidentiality. Participants provided written, informed consent, whichpermitted taping of the sessions. Group discussions were guided by threequestions: (1) What do you consider case management to be? (2) How wouldyou describe the case manager job/role/function? and (3) What do casemanagers strive to achieve? The themes and patterns developed from thechart review findings were then presented for reactions. Weindependently tape recorded, transcribed, and content analyzed thesessions. The themes we identified were compared and refined. LIMITATIONS OF THE RESEARCH Although there were limitations to this kind of research, effortswere made to address these limitations. Using six different programs toselect a sample for chart review and attempting to include case managersand supervisors from the entire delivery system in the focus groupprocess allowed us to see the "big picture." Selecting thesamples broadly, as opposed to limiting the selection to one program,made it more likely that the results would describe the general casemanagement process, rather than the idiosyncrasies of case management asit was practiced in a single agency. In addition, triangulation triangulation:see geodesy. The use of two known coordinates to determine the location of a third. Used by ship captains for centuries to navigate on the high seas, triangulation is employed in GPS receivers to pinpoint their current location on earth. , collecting data from multiple sourceseach having different perspectives, was used to increase reliability andvalidity. We gathered and analyzed data independently, then compared andcombined results. Moreover, three outside "experts" withextensive HIV/AIDS case management experience examined the data and theresults of the analysis. At each stage the findings were systematicallyrefined and revised to reconcile or account for variations. The highdegree of agreement between us and between the outside experts and ussuggests that the content analysis was performed well (Yegidis et al.,1999). Typically, the selection of participants or cases for exploratoryresearch is not rigorous (Yegidis et al., 1999). In this study, focusgroup participants were identified through a process of self-selection,and a purposive sampling strategy was used to select a sample ofagencies as well as a sample of charts for review. Asking case managersand supervisors to "volunteer" to participate in the study,and asking agency directors to select the charts that "best"represented their work, introduced a selection bias that limits theusefulness of the study findings. It is not possible to determine if theresults from the focus group sessions are truly representative of thepractice of all case managers in the region, including those notmotivated to participate. Nor is it possible to determine if the resultsfrom the chart review are truly representative of practice across theentire region. Although the study does provide information concerning aparticular group of case managers and cases, these problems with external validity make it difficult to know whether the findings can begeneralized to HIV/AIDS case management practice outside the tri-countyregion. In addition, although secondary data analysis generally isregarded as a cost-effective, efficient, and nonintrusive approach(Yegidis et al.), there can be limitations to use of data, such as chartrecordings, when collected for purposes other than the researchactivities. For this reason we decided to use focus groups with casemanagers and supervisors. RESULTS Eight major themes that explicate the case management processemerged from the chart reviews and were confirmed and elaborated on inthe focus group discussions. 1. Highly Vulnerable Clients The HIV/AIDS case management programs serve highly vulnerableindividuals with a history of complex and multiple life stressors andlimited resources for success in coping. Not only is the clientpopulation struggling with the demands of managing a diagnosis ofHIV/AIDS, but also many are confronting an array of environmentalstressors that are experienced as overwhelming. Many clients hadhistories of being either inadequately housed, (living in shelters orsubstandard substandard,adj below an acceptable level of performance. housing, or facing eviction The removal of a tenant from possession of premises in which he or she resides or has a property interest done by a landlord either by reentry upon the premises or through a court action. ), hungry, poorly clothed clothe?tr.v. clothed or clad , cloth��ing, clothes1. To put clothes on; dress.2. To provide clothes for.3. To cover as if with clothing. , orisolated. Living marginally, their ability to influence and controltheir lives was limited. Some were already dependent on a safety net ofbasic provisions for entitlements and benefits, including financial andmedical assistance. With limited resources, strengths, andproblem-solving skills, the addition of HIV/AIDS presented only one morepressure that brought these individuals to case management programs. Although disease management, including helping clients deal withtheir diagnosis, medications, or treatment regimens and assisting themin keeping and getting to medical appointments, is an essentialcomponent of HIV/AIDS case management, almost as much of case managementis centered on needs, problems, and situations that are not directlyrelated to HIV/AIDS (Grube & Chernesky, 1998). As case managers andsupervisors noted, their clients would need case management even if theydid not have HIV/AIDS and need it long after their disease isstabilized. In fact, had they not been diagnosed with HIV/AIDS, manywould never have had access to or received critically needed servicesmade possible through their case management programs. Some clientsappeared aware of this fact. Case managers described several individualswho requested services and presented at programs as HIV-positive, whenin reality they were not. There were hardly any individuals using the tri-county casemanagement system who were not highly vulnerable, with a history ofcomplex and multiple stressors, and having limited resources. Becausethe tri-county region spreads across suburban, rural, and urbancommunities and the Title I case management in the region is intended toserve individuals who are not Medicaid eligible, we expected to findgreater diversity in the caseloads, including less vulnerableindividuals. It appears, therefore, that there may be many individualsinfected with and affected by HW and AIDS in the region who are notavailing themselves of these case management services. This may bebecause, as Rothman and Sager (1998) suggested, case management servicesseem most appropriate for work with clients who not only have"specialized problem conditions" such as HJV/AIDS, but alsohave "certain difficulties in common...deficits in the skills ofeveryday living, a lack of information and low self esteem" (p. 6). 2. Avenues to Case Management There are two different avenues through which individuals entercase management, giving the impression that there are two different casemanagement systems. Most enter in crisis (actual or perceived); othersenter on learning that assistance and services are available for theiruse. Discovering a dual entry and case management system was completelyunexpected. Most of the crises that bring individuals to case managementprograms are unrelated to diagnosis or medical reasons. Crises includepending eviction, utilities being cut off, and lack of food or housing.In many instances individuals who had been living marginally, but copingwith their situations, could no longer do so when faced with thechallenge of also managing their disease. When clients present in crisis, case managers move quickly, gettingstraight to the core of the crisis. Relatively little time elapsesbetween initial contact with clients and case manager interventions tofollow-through. Case management is extensive. A broad range of contactsis mobilized on behalf of clients. Case management also is intensive.There is a high frequency of contacts in an effort to reach and enlist en��list?v. en��list��ed, en��list��ing, en��listsv.tr.1. To engage (persons or a person) for service in the armed forces.2. To engage the support or cooperation of.v. those in the provider network or in the clients' support network."Doing for" clients generally dominates at this time despitecase managers acknowledging that they would like clients to act on theirown behalf. The case managers' focus on action during client crises takespriority over formal assessment. As one worker said, "Theirhistories may have to wait." Another said, "'When aclient first comes in...what you might think is the agenda for the day,it's not going to happen because there's issues there thathave to be addressed before you even start thinking about histories ortreatment plans or how you are going to work with this client." In fact, chart recordings seldom reflected that a complete formalassessment took place or that goals and care plans were based on theassessment. Although many acknowledged the value of assessment,psychosocial psychosocial/psy��cho��so��cial/ (si?ko-so��shul) pertaining to or involving both psychic and social aspects. psy��cho��so��cialadj.Involving aspects of both social and psychological behavior. can come in handy' some saw formal assessment aspotentially detrimental to their efforts to engage clients. Casemanagers believed that it was critical for them to act on the crisisimmediately, particularly because doing so helped establish andstrengthen the client--case manager relationship. They considered thefailure "to meet clients where they are" as a key factor inclients not continuing with or returning to the case management program.Program supervisors, on the other hand, wanted greater attention placedon assessment and case planning. Given the absence in may case recordsof complete formal assessments and planning activities, what initiallyhad appeared to be either limitations in recording or practice, wassubsequently, in many instances, seen as a deliberate practice approachon the part of case managers to enhance effective services delivery. Far fewer clients entered case management not in crisis. For them,HIV/AIDS tended to be the presenting concern. Individuals were referredmost frequently for HIV testing, to consider how to disclose theirdisease to their family, or to prepare for changes in their lifesituations that could be anticipated as they manage their disease. Withthese clients there was a greater opportunity to assess needs broadly,to consider how much clients could do for themselves, and negotiate whattasks case managers would do and what clients would do. Thus, only casemanagement with clients not in crisis mirrors the traditional view ofcase management as a process of sequential core functions, beginningwith assessment and planning, that appears in the literature. For thosein crisis, case management does not resemble the traditional view. 3. Components of Case Management The case management process had two identifiable components: (1)crisis management and (2) maintenance management. Work with clientsseemed to shift back and forth from resolving crises to maintainingclients' stability. "Maintenance management," a term wecoined, was used to capture the unique characteristics of the noncrisiscomponent of case management and involved identifying and addressingadditional or emerging needs, services coordination, continuouscollaboration with providers, and ongoing monitoring of client statusand progress. During the maintenance management period, many clients found thatthey were again in crisis and required crisis management. Although thelength of time in and between each crisis tends to be unpredictable, itis not surprising to see these clients living a crisis to crisisexistence. As one worker said, I see this one client, every time the client comes in it's acrisis mode. That's her modus operandi [Latin, Method of working.] A term used by law enforcement authorities to describe the particular manner in which a crime is committed.The term modus operandi is most commonly used in criminal cases. It is sometimes referred to by its initials, M.O. . You're not going to beable to get her to see her counselor on a regular basis--you'll seeher on Friday night, "I'm getting kicked out of my housebecause I haven't paid rent." As this example illustrates, in many instances it is not theHIV/AIDS that is necessarily the crisis trigger. The crisis is much morelikely to be brought about because of financial arrears A sum of money that has not been paid or has only been paid in part at the time it is due.A person who is "in arrears" is behind in payments due and thus has outstanding debts or liabilities. ; pendingevictions; gas, electricity, or telephone being cut off; lack of food;or volatile family relationships. After their crisis is resolved,clients may no longer keep in touch with their case managers, yet theytend to re-enter the case management program when they experienceanother crisis. Therefore, clients tend to see and use case managementas a longterm revolving door, and formal case closings have no realmeaning in this system because clients return at will. 4. Bounded Provider Networks Bounded provider networks enhance mobilization mobilizationOrganization of a nation's armed forces for active military service in time of war or other national emergency. It includes recruiting and training, building military bases and training camps, and procuring and distributing weapons, ammunition, uniforms, of resources andservices. Each case management program has its own clearly establishedand bounded network of service providers that is mobilized as needed as neededprn. See prn order. .Both case managers and clients are generally knowledgeable about theavailable resources and services and use the network extensively. Thenetwork defines and limits the service package available to clientsbeing served by any one program. Chart recordings showed that eachprogram used the same resources and providers repeatedly to obtaintransportation, food, and housing. Some services, such as housing andemergency financial assistance, were part of the networks of more thanone case management program, and consequently were heavily used. The case manager develops and maintains the services network thatis crucial to effective services delivery, which then can be accessed bythe case manager or clients. In crises, case managers use the network onbehalf of clients. Case manager--provider relationships determinewhether their phone calls are returned, whether urgent requests areresponded to swiftly, or whether resources are activated before formalclearance, eligibility checks, or completion of required paperwork.Although the availability of critical resources and services is a majorinfluence on case management, case managers indicated that thecooperation of agency providers and workers was also a key influence ontheir work. One case manager captured this sentiment: You know, if I hear that maybe one particular case manager is onthis case and I happen to work well with that person, I go 'good,this is going to be an easy case. We'll be able to work welltogether.' And then there's other ones; you go, "oh, myGod"... You have to struggle to try to get through to them. Of particular concern to case managers was the insensitivity in��sen��si��tive?adj.1. Not physically sensitive; numb.2. a. Lacking in sensitivity to the feelings or circumstances of others; unfeeling.b. ofworkers in provider agencies, slowness of and bureaucratic bu��reau��crat?n.1. An official of a bureaucracy.2. An official who is rigidly devoted to the details of administrative procedure.bu red tape inthe entitlement systems, and duplication among case managers indifferent programs. One case manager described the situation:"Certain service providers that we refer our client to (I'mnot mentioning names), this place just never picks up the case or theytreat the client so badly that the client will never go backagain." Another said, "Some workers in the system are almostpunitive to our people." These factors invariably in��var��i��a��ble?adj.Not changing or subject to change; constant.in��vari��a��bil made it more difficult to obtain servicesfor clients and resulted in many more steps to be taken by case managersand greater delay in meeting client needs. Therefore, maintaining goodrelationships with workers, and knowing which workers to call on, wereseen as important components of the case managers' job. The case management literature claims that in addition to beingclient oriented o��ri��ent?n.1. Orient The countries of Asia, especially of eastern Asia.2. a. The luster characteristic of a pearl of high quality.b. A pearl having exceptional luster.3. , a function of case management is to redress Compensation for injuries sustained; recovery or restitution for harm or injury; damages or equitable relief. Access to the courts to gain Reparation for a wrong. REDRESS. The act of receiving satisfaction for an injury sustained. shortcomings in the services delivery system (Sowell & Grier, 1995).It is the gaps in and unresponsiveness un��re��spon��sive?adj.Exhibiting a lack of responsiveness.unre��spon of the services network thatmakes case management necessary (Rose, 1992). Because of their keypositions in the network, case managers are expected to advocate forchanges and to influence the development of new resources and programsto make services more available and accessible (Moxley, 1997). Despitecase managers and supervisors noting in group discussions that therewere limitations of the regional services delivery system that wereobstacles to case management effectiveness, case managers tookresponsibility for redressing system shortcomings by attempting tomaintain essential relationships within the existing network rather thanby expanding the provider network to increase service options. 5. Linkage and Mediation Extensive linkage and mediation activity characterizes casemanagement. Connecting clients to resources is an important function ofcase management. As one worker said, "The client who doesn'tneed case management is one who is very knowledgeable about resourcesand how to get them." Connecting to resources, however, even thosethat are used regularly, such as transportation to appointments orsupport group meetings, involves many tasks and steps as well asconsiderable time and energy. Linking clients to resources ofteninvolves a mix of advocacy and mediation. These activities can bedemanding and require case managers to intervene between the client andproviders with whom the client is already linked, presenting and arguingtheir clients' cases to postpone post��pone?tr.v. post��poned, post��pon��ing, post��pones1. To delay until a future time; put off. See Synonyms at defer1.2. To place after in importance; subordinate. or halt actions, or to revise orre-establish the conditions for ongoing linkage. Case managers describedthe process as reminding workers" or "changing theirminds." An illustration was given: "I see it as calling upwhen the public assistance worker s ays 'come back in threeweeks,' or 'no you're not entitled en��ti��tle?tr.v. en��ti��tled, en��ti��tling, en��ti��tles1. To give a name or title to.2. To furnish with a right or claim to something: ,' and saying'help me understand how you came to that decision, here's someother facts?" Successful advocacy and mediation can reduce the needto draw on the finite services from the bounded network. Each time acase manager prevents eviction caused by rent arrears, for example, itis not necessary to seek new housing and draw on a relatively scarceresource. Efforts to obtain new services or negotiate to retain existingservices for clients are accompanied by an elaborate paper trail ofchart notations and supporting documentation. Because notes on linkageand mediation activities dominated chart recordings, the overwhelmingimpression from the chart review was that these activities dominate casemanagement practice. However, case managers saw it differently. Theybelieved that the extensive amount of "case management notes"that are required for documentation of their efforts to work withservices providers skewed skewedcurve of a usually unimodal distribution with one tail drawn out more than the other and the median will lie above or below the mean.skewedEpidemiology adjective Referring to an asymmetrical distribution of a population or of data the picture of case management. 6. Case Managers as Support Systems Case managers serve as clients' support systems. According to according toprep.1. As stated or indicated by; on the authority of: according to historians.2. In keeping with: according to instructions.3. case managers the purpose of case management is to provide people livingwith HIV/ AIDS with the support necessary to ensure that they are ableto maintain a reasonable quality of life. Supporting clients isaccomplished in two ways. First, case managers assisted clients indeveloping a personal support system, reconnecting them with friends andfamily or encouraging them to participate in support groups.Reconnection was particularly critical for clients struggling withissues of partner notification partner notificationPublic health Any formal and systematic means of informing the sexual partner(s) of a person with an STD, that the person being tested is infected with an organism–eg, HIV, N gonorrhoeae, T pallidum and disclosure. One case managerdescribed it this way: The one thing I think is amazing a��maze?v. a��mazed, a��maz��ing, a��maz��esv.tr.1. To affect with great wonder; astonish. See Synonyms at surprise.2. Obsolete To bewilder; perplex.v.intr. is your first support system isyour family, but so often people are not disclosing to family members,so they're cutting off a major area of support, and that happensover and over, so weworkwith disclosure as much as possible. Second, case managers use themselves as their clients' supportsystem. They admit, "We become their family, the surrogate surrogaten. 1) a person acting on behalf of another or a substitute, including a woman who gives birth to a baby of a mother who is unable to carry the child. 2) a judge in some states (notably New York) responsible only for probates, estates, and adoptions. family?' Case managers refer to this as "being there forclients, and sharing their clients' journey." Examples ofsupport included arranging special trips and holiday celebrations,visiting clients when they were hospitalized, and arranging for familyand significant others to visit. As part of the funding mandate to workwith individuals affected as well as infected by HIV/AIDS, support alsoinvolved working with the entire family network. One worker said,"I can go to a house and meet with the client and find out the twokids are truant, or this is what happened when I got beat up ... andthen it's not about HIV anymore, you have to help thisfamily." For many families, such attention given, particularly tochildren, was an opportunity that might never have been available if afamily member did not have HIV/AIDS. Although the charts included ample evidence of support activities,they were rarely fully recorded and never recorded as supportive.However, in the focus group discussions, case managers stressed thatsupport was a critical component of their case management. Yet, theyalso were able to articulate their concern about being excessivelysupportive, doing more for clients who might do more for themselves, andcreating dependence. The challenge, as they saw it, was to know when todraw the line. A case manager reflected, after describing a situation inwhich she helped a client who wanted to get rid of the deceasedpartner's cat: "You don't always know for sure if theyare coming to you with little things that you really shouldn't bedoing or if this is a big thing that they really just don't knowwhere to turn and maybe you can help them out." 7. Case Management Inactivity inactivitySedentary activity Internal medicine An absence of physical activity and/or exercise, a predictor of obesity. See Couch potato. Physical activity, Vigorous exercise Extended periods of case management inactivity are typical. Thechart review revealed many clients who had extended periods of casemanagement inactivity. For anywhere between one month and as much as ayear, notations did not indicate ongoing contact with clients. Effortsto reach clients or monitor client progress and status ended, oftenabruptly, when clients failed to respond. Invariably, however, manyclients returned when their situation again became overwhelming. The data did not reveal any consistent or uniform mechanism forensuring case manager--client contact during these periods ofinactivity. Programs did not have monitoring polices regarding timeframes, recording requirements, or the nature of case management work tobe carried out in that period. In fact, the frequency and regularity ofmonitoring, whether it involved direct or indirect contact, appeared tobe determined by individual case managers rather than programs. Effortsto keep in touch and to check on clients eventually petered out,although efforts were more likely to continue when case managers werelocated on-site where clients came for other services. In contrast to crisis management, maintenance management seems tobe an optimal time for case managers to work with clients on needs andissues that could not be addressed during crisis, including formalassessments and skill building tasks, or anticipating and preventingcrises. As one example, support groups may be particularly valuable inkeeping individuals engaged with case management programs. Skill building is another avenue. It includes a range of tasking,beginning with such basic things as teaching clients techniques to keeptrack of their medications. According to case managers, skill buildinginvolves helping clients take charge of their lives, "working inthe areas of finances, helping them with their budget ... housekeeping,parenting, family care ... giving the job skills." It also involvesempowerment, "helping them to manage the system ... learning tonegotiate the system." Skill building and helping to support skilldevelopment were identified by these case managers as critical to theirwork, yet could be accomplished only when clients were not in crisis.Seldom discussed in the literature, skill building appears to be arelatively neglected case management function. 8. Constraints Case management activities are shaped as much by constraints ofclients, programs, and environments as by the nature of HIV/AIDS.Although case managers and supervisors see the goal of case managementas providing clients with "what they need, when they need it"for as long as necessary, certain constraints interfere. Similarconstraints have been identified in other case management fields(Biegel, Tracy, & Song, 1995; Intagliata & Baker, 1983; Moore,1992). These constraints include those from the agency itself, theprogram structure, caseload case��load?n.The number of cases handled in a given period, as by an attorney or by a clinic or social services agency.caseloadNoun size, client functioning, and, as notedearlier, the cooperation of network providers, not merely theavailability of providers. The program through which a client enters the case managementsystem can affect what the client receives. An agency'sorganizational goals and mission establish the purpose of its casemanagement program, which then determines the primary focus of casemanagement. For example, health-based programs tended to emphasizedisease management and linkage and mediation with medical providers.Program structure often dictates the range of services offered. Forexample, clients are most likely to participate in support groups if theagency offers it. If a program does not provide support groups, it ismore difficult for clients to attend one because doing so involves beinglinked to another agency that offers groups and having transportationarranged. Chances of clients not following through are considerable.Multiservices programs therefore can be more responsive to clients andhave a higher level of services use because they offer more services.They therefore are less dependent on the provider network for managingclients. Caseload size and client functioning posed other constraints.Caseload size seemed to influence how much case managers could do fortheir clients. As one case manager noted, "As the numbers grow, youjust don't have the luxury of doing as much for theindividual?' Clients with families tend to bring to the case management programsthe need for services of their family members. Children especially arepresented for case managers to find summer camps and recreationalprograms, which can help families cope with the disease. Spouses orpartners may be helped to consider and obtain HIV testing. Because somany of the case managers in this region work with the entire familyconstellation Constellation, shipConstellation(kŏnstĭlā`shən), U.S. frigate, launched in 1797. It was named by President Washington for the constellation of 15 stars in the U.S. flag of that time. , the actual client count of those infected with HIV/AIDSis often misleading. Client functioning and client characteristics such as culture,socioeconomic status, education, fears, and dual diagnoses affect thedemands placed on case managers. Culture can exert a powerful influence.Case managers described, for example, how much effort goes into helpingLatino clients deal with their diseases, especially if it is notattributed to substance abuse (Marin, Gonzalez, & Gomez, 1998). Somerecent immigrants and migrant mi��grant?n.1. One that moves from one region to another by chance, instinct, or plan.2. An itinerant worker who travels from one area to another in search of work.adj.Migratory. workers are wary about using servicesbecause of their undocumented or illegal status, whereas others have aculturally prescribed view of appropriate ways to interact with medicalstaff that differs from case managers' expectations of when and howclients will use physicians. For example, one case manager explained howmuch work goes into helping Mexican clients understand the disease andits treatment: I see a lot of clients of mine that come in and just from theirnationality nationality,in political theory, the quality of belonging to a nation, in the sense of a group united by various strong ties. Among the usual ties are membership in the same general community, common customs, culture, tradition, history, and language. and their background, they are taught to do whatever thedoctor says, that is what it is, you don't question it, youdon't argue it, and a lot of people are just getting sicker becausethey are not questioning and talking about what medications they aretaking, what is working. Certain characteristics not only affect client capacity toparticipate in care planning and implementation, they are alsoindicators of the scope of service needs. The more disorganized dis��or��gan��ize?tr.v. dis��or��gan��ized, dis��or��gan��iz��ing, dis��or��gan��iz��esTo destroy the organization, systematic arrangement, or unity of. theirlives are, and the fewer coping capacities that can be called on, themore time, energy, effort, and resources will be needed and expended ex��pend?tr.v. ex��pend��ed, ex��pend��ing, ex��pends1. To lay out; spend: expending tax revenues on government operations.See Synonyms at spend.2. .Therefore, the notion of caseload size may be less useful in consideringworkload than client characteristics, family size, and concomitant concomitant/con��com��i��tant/ (kon-kom��i-tant) accompanying; accessory; joined with another. concomitantadjective Accompanying, accessory, joined with another demands. CONCLUSION Case management in this tri-county region is clearly an essentialservice for that vulnerable segment of the HIV/AIDS infected andaffected population who confront basic issues of daily living. Thetypical client, regardless of disease diagnosis or prognosis prognosis/prog��no��sis/ (prog-no��sis) a forecast of the probable course and outcome of a disorder.prognos��tic prog��no��sisn. pl. prog��no��ses1. , needsongoing support and assistance in obtaining and maintaining essentialentitlements and services from a bounded and finite service network.Because clients tend to present in crisis, programs structured in a waythat permits case managers to engage quickly and move to meet immediateand presenting needs are most likely to be responsive to this clientpopulation. Because the least developed component of case managementprograms is the work done once the immediate crisis that prompted therequest for services is resolved, it is essential that greater attentionbe given to the periods of lesser activity. The periods of lesseractivity might provide a unique opportunity for service delivery--formaintenance management. Support groups and skill building may beespecially appropriate during this period. Whether all case managershave the skills to run groups or teach clients is not yet clear. The results of these studies were incorporated into the revised RFPfor Title I Ryan White Case Management and Support Services support servicesPsychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services issued bythe Westchester County Department of Health (1998). All case managementprograms were expected to address four content areas, either directly orindirectly through coordinated referrals: (1) disease management, (2)referral and linkage to entitlements and benefits, (3) referral andlinkage to essential services, and (4) development of skills for lifemanagement. In addition, the department acknowledged that casemanagement should focus on the acquisition of services and benefits tomanage the illness, the development and maintenance of life skills andsupport systems, and the resolution of crises. The critical place of the HIV/AIDS case manager, and how the casemanager uses himself or herself, emerged from this project. We woulddescribe the case management process as a direct service in which thecritical client--case manager relationship enables case managers toassist and support clients as they manage their disease and theirmultiple needs. It has many similarities to the strengths model of casemanagement with people suffering from severe and persistent mentalillness (Rapp, 1998). Had this project been limited to chart reviews, adifferent picture of the case management process would have beenderived. By combining chart reviews with focus groups, and using thefocus groups for case managers and program supervisors to refine andelaborate on the initial impression obtained from chart reviews, it islikely that a more accurate and richer picture of HIV/AIDS casemanagement was captured. ABOUT THE AUTHORS Roslyn H. Chernesky, DSW DSW - penis war , is professor, Graduate School of SocialService, Fordham University; 113 West 60th Street, New York, NY 10023;e-mail: chernesky@fordham.edu. Beth Grube, PhD, is assistant professor,Wurzweiler School of Social Work The Wurzweiler School of Social Work at Yeshiva University was founded in 1957. It is a methods-based institution offering concentrations in social casework, social group work, and community social work. Fieldwork is an integral part of the curriculum. , Yeshiva University Yeshiva University,in New York City; mainly coeducational; begun 1886 as Yeshiva Eitz Chaim, a Jewish theological seminary, chartered 1928 as Rabbi Isaac Elchanan Theological Seminary and Yeshiva College; renamed 1945. , New York. Anearlier version of this article was presented at the 4th InternationalConference on Long-Term Care Case Management, American Society on Aging,December 11, 1998. The HIV/AIDS Case Management Project was supported bythe Westchester County Department of Health. The authors thank ReneeO'Rourke, director of community programs, and the case managers,supervisors, and directors in the tricounty HIV/AIDS case managementprograms who participated in this study. REFERENCES Biegel, D. E., Tracy, E. M., & Song, L. (1995). Barriers tosocial network interventions with persons with severe and persistentmental illness: A survey of mental health case managers. CommunityMental Health Journal, 31, 335-349. 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