AIDS Into Care

JANAC Vol. Andersen et al. 10,/ No. Nurses 2, March/April Decrease Barriers 1999

Nurses Decrease Barriers to Health Care by “Hyperlinking” Multiple-Diagnosed Women Living With HIV/AIDS Into Care Marcia D. Andersen, PhD, RN, FAAN, CS, Geoffrey A. D. Smereck, AB, JD, Elaine M. Hockman, PhD, Dennis J. Ross, and Kyle J. Ground The Well-Being Institute (WBI), a community-based nursing organization in Detroit, Michigan, has developed and put into practice innovative intervention and service delivery models to assist HIV-positive women who have a history of substance abuse and mental illness. These multiple-diagnosed women are known to have special problems and barriers to accessing health care. The service delivery model is based on “hyperlinking” women into hard-to-get health care appointment slots through nurses’ personal contacts in health care clinics. The intervention model is the personalized nursing LIGHT model. This article describes the service delivery and intervention models and discusses outcomes of the WBI Women’s Intervention Program in practice. The program locates HIVpositive, substance-abusing women; enrolls them in primary medical and mental health care; and helps retain them in health care. The results of the model in practice demonstrate its success in hyperlinking hardto-reach and hard-to-serve HIV-positive women with health care and other needed services and resources. In addition, these multiple-diagnosed women have shown positive effects with respect to improved sense of well-being and decreased psychosocial distress. Key words: Personalized Nursing LIGHT Model, barriers/access to care, transportation, multiple diagnosed women, HIV/AIDS

W

omen with the multiple diagnoses of HIV infection, substance abuse, and mental illness have special problems and barriers accessing health care (Huba & Melchoir, 1994; Weissman et al., 1995). Historically,

these individuals have been medically underserved (Weissman et al., 1995). The Well-Being Institute (WBI), a community-based nursing organization in Detroit, Michigan, has developed innovative intervention and service delivery models to assist women who are underserved to overcome health care access barriers. In this article, we will describe our service delivery model, which is based on “hyperlinking” women into hard-to-get health care appointment slots through nurses’ personal contacts in health care clinics. We will also explain how nurses and other staff use the personalized nursing LIGHT model as the intervention model of care (Andersen & Smereck, 1989, 1992). Finally, we will discuss our success in improving receipt of HIV-related medical services.

Background The current epidemic of AIDS has propelled to utmost urgency the need to identify, recruit, and retain in appropriate health care critical subpopulations whose drug-using and sexual behaviors make them particularly high risk for acquisition and transmission of HIV. Injecting drug users (IDUs) and persons practicing high-risk sex with multiple sex partners are Marcia D. Andersen, PhD, RN, FAAN, CS, Vice President, Well-Being Institute. Geoffrey A. D. Smereck, AB, JD, President, Well-Being Institute. Elaine M. Hockman, PhD, Coordinator, Research Support Laboratory, Computer and Information Technology, Wayne State University. Dennis J. Ross, Transportation Coordinator. Well-Being Institute. Kyle J. Ground, Research Assistant, Well-Being Institute.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 10, No. 2, March/April 1999, 55-65 Copyright © 1999 Association of Nurses in AIDS Care

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groups of people who have been found to be at risk. These behaviors are not gender specific. Women who engage in these behaviors are also at risk (Andersen, Smereck, & Braunstein, 1993; Smereck & Hockman, 1998). IDUs and persons practicing high-risk sex behaviors tend to be “hidden populations” due to the criminal nature of their activities, their socially disaffiliated lifestyles, and their accompanying high incidence of homelessness and mental illness (National Institute on Drug Abuse [NIDA], 1994; Smereck, Melchoir, Huber, & Andersen, 1997). A critical need has arisen for innovative outreach strategies to bring these hard-to-reach clients into effective AIDS treatment and HIV risk-reduction programs. Effective outreach strategies must target the racial, ethnic, gender, and social subpopulations whose behaviors present a high risk of transmission of HIV infection (Smereck & Hockman, 1998; Sorensen & Miller, 1996). Additionally, outreach strategies must focus on assisting the subpopulations to overcome their “access barriers” to receiving essential health care. Recent research has shown, for example, that HIV-infected women IDUs encountered a substantially larger number of access barriers than HIV-infected male IDUs in trying to obtain health care for their HIV disease (Huba & Melchoir, 1994; Weissman et al., 1995). For women living with both HIV disease and substance abuse, many institutional, psychosocial, and socioeconomic factors impinge on their ability to gain access to and effectively use essential primary health care. These factors include poverty, significant feelings of powerlessness, psychosocial distress, mental illness, consistent lack of social supports and related resources, and lack of access to substance abuse treatment (Weissman et al., 1995). Because the largest group of HIV-infected clients has been men who have sex with men, many HIV care delivery systems are oriented toward that population, and women tend to be underrecognized and underdiagnosed (Weissman et al., 1995). Because barriers to accessing health care are gender specific, interventions aimed at decreasing the barriers to access to care also need to be gender specific. Once access to care occurs, the importance of facilitating “retention” of hard-to-reach clients in HIV risk reduction and treatment programs becomes a primary issue (Hines et al., 1997). Retention of clients is

critical to achieving and maintaining HIV risk reduction and health-seeking behavioral changes. Because HIV-infected clients generally need robust and energetic advocacy by skilled nurses and outreach staff to overcome persistent access barriers to essential health care and related support services (Hines et al., 1997), program effectiveness often requires long-term client/ staff partnership. Enhanced retention in primary care is especially important for clients suffering from mental illness in addition to their HIV disease. Effective mental health counseling is often the first step to enrolling and retaining women in primary care.

Service Delivery Model: Hyperlinking Hyperlinking, an Internet term, describes the process whereby a person accesses a new Internet site by moving quickly from one site to the new site by way of a direct link connecting them. Bypassing cumbersome and technically complex access procedures, the new site address is located and accessed instantly when the link is activated. Through special contacts and/or colleagues, nurses are able to bypass red tape blocking points and the slower procedures usually required to obtain a health care appointment. This enables nurses to hyperlink clients into care quickly. Clients do not need to search for the most appropriate care provider. They are able to avoid repeated telephone attempts due to busy signals. They do not suffer waits of several weeks until the next available appointment. The program nurses personally know the care providers and know which provider is the most appropriate to meet a specific client’s needs. Program nurses arrange to link clients into cancellations or empty appointment slots at less favorable and, thereby, more available times. Service Delivery Model Objectives The objectives of the service delivery model are to locate eligible women and to reduce health care access barriers by hyperlinking them into health care. Strategies used to reduce the health care barriers include (a) hyperlinking women into health care appointments and accessing needed resources, (b) providing a daytreatment program, (c) providing transportation to the program and health-related appointments, (d) providing child care during the program and health-

Andersen et al. / Nurses Decrease Barriers

related appointments, and (e) accompanying women to appointments. Locating Underserved Women

• •

At the WBI in Detroit, four methods were used to locate multiple-diagnosed women in need of medical and mental health primary care services: • • • •

using street outreach in Detroit’s inner city, hosting information meetings for staff at local community-based organizations (CBOs), attending case conferences at HIV case management CBOs, and client referrals of friends and associates at local HIV support groups for women.

Street outreach. The staff of the WBI has a long history of implementing successful street outreach programs to locate and recruit substance abusers (Andersen, 1986; Andersen et al., 1993; Andersen, Smereck, & Hockman et al., 1995; Andersen et al., 1998). Since 1986, the authors working at our affiliated nursing company, the Personalized Nursing Corporation, have used indigenous outreach workers to locate and recruit drug users in Baltimore, New York City, and Detroit. Several of the strategies that proved to be successful over the years and that are used by the WBI currently are the following: • •

•

Hiring outreach staff who have cultural and residential ties to the targeted neighborhoods. Contracting with “consultants,” women who currently use drugs, to accompany staff on street outreach excursions. These consultants show outreach workers where to go in the neighborhoods. The consultants then go into operating drug houses, approach groups of users on the street corners, and enter apartment buildings where drug users gather. They bring women out to the program van to meet the outreach staff members, who explain the program to them. Contracting with a local public health nurse who is familiar with the neighborhood to accompany the outreach team to explain the

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health benefits of participation, which outreach workers “translate” to the potential recruits. Offering a service such as free HIV testing or food coupons to encourage participation. Going into neighborhood walk-in centers, courts, shelters, and soup kitchens.

Some important considerations when conducting street outreach include the following: (a) having an operating car phone in the van, (b) not using the phone when potential recruits can see it in use (they may steal it), (c) letting the office know the areas the van will be visiting, (d) making sure the van is in good working order to avoid preventable breakdowns, and (e) having all forms necessary for recruitment available and organized in the van. Women recruited through outreach who are currently using drugs are offered free HIV testing to determine their HIV status. If they are negative, they are given health teaching on how to prevent HIV and a referral into a drug treatment program if they want it. If they are positive for HIV and if they are willing to participate, they are immediately enrolled in the WBI’s Women’s Intervention Program. They are then enrolled in primary care and support groups immediately. They are also connected to an HIV case manager to help them access resources available to meet other needs (food, clothing, and shelter). To date, 5% of the women in the program were enrolled through outreach. Networking with CBOs. Although 10% of the clients were referred by their friends in the Women’s Intervention Program, and 5% came from our outreach efforts, 85% of the HIV-positive, substance-abusing women participating in the program were referred by other CBOs. The nature of the dysfunctional behavior of many of these multiple-diagnosed women creates problems for traditional case management organizations. From the start, nurses held informational meetings about the goals of the program with staff from local CBOs serving persons living with HIV/AIDS. Now our nurses attend the case conferences at the two local HIV case management agencies weekly. There, they pick up referrals from case managers as well as report to the interdisciplinary team members on the

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activities of women already referred to the program. Signed interagency confidentiality agreements allow for communication and coordination of care among care providers of all the agencies serving the women. Each agency agreed in writing to keep shared information confidential. Once a woman is in our program, case managers from other community-based programs often come to our office to find their clients. To further our rapport with these programs, we have set aside one office for these caseworkers to meet with our shared clients at our program office. Helping each other locate women cements relationships among caregivers and facilitates the hyperlink into services and resources when they are needed. Because we are seen as helpful colleagues, our staff can help clients access resources such as food vouchers, housing, or medical appointments by calling colleagues at other agencies serving our clients. Through this cooperation and hyperlinking, hard-to-access resources and appointments are accessed more easily.

Reducing Health Care Access Barriers by Hyperlinking Women Into Health Care WBI nurses have close working relationships with caregivers at case management agencies and other agencies coserving our clients. They call their colleagues to facilitate quick referrals. They also let care providers know if a woman is not going to keep an appointment. The nurses know about cancellations ahead of time because the client does not “catch the van” that day. Because of early notification of canceled appointments, caregivers are inclined to help our nurses reschedule the canceled appointments. Our program provides services such as transportation, child care, and accompaniment in addition to hyperlinking women into health care appointments and accessing needed resources such as food, clothing, and housing. This full array of services promotes health care access and retention. Primary Health Care Hyperlinking is our method to facilitate interaction between health care providers and our clients. A WBI medical surgical staff nurse uses her past contacts to

obtain quick appointments for our clients. By calling old friends and acquaintances, the nurse gets our clients squeezed into appointments. When a client breaks an appointment, the nurse apologizes for her and gets her another appointment. The nurse also arranges transportation to facilitate the client’s time of arrival, and, if necessary, the nurse accompanies the client. Soon, clients see value in receiving care and make and keep their own appointments, thus becoming retained in caregiving services. Primary mental health care. One of the most important actions our nurses take is to link women with a mental health care provider. Many of the women selfmedicate with street drugs for their mental illness. Before women can attend to medical care, they need to be stabilized psychiatrically. One of our nurses, a mental health nurse, is a good friend of the main primary mental health caregiver for our clients. She facilitates the women getting seen by a care provider and being put on psychotropic medications as needed. Seventynine percent of the women in our program have been found to be mentally ill (Smereck et al., 1997). Retention in primary care. After the women enroll in our program and begin receiving primary medical and mental health care, we employ many of the same strategies to retain them in primary care. Nurse needs assessments and counseling, using the personalized nursing LIGHT model, which is explained below, continue weekly. Transportation, accompaniment, and child care continue. In addition to these strategies, a day-treatment program has been implemented to provide structure to the retention strategies. Transportation Transportation to and from health care appointments was identified as a major barrier to accessing services in the Women’s Intervention Program. We purchased an additional van, and a viable transportation system emerged. The east side of Detroit was serviced with one van; the west side was serviced with the other. Van drivers, who are indigenous to the community, bond with the women on their routes. For safety, a van driver and van rider is present on all van runs. This has

Andersen et al. / Nurses Decrease Barriers

proven important in the handling of emergencies, such as seizures, vomiting, or arguments in the van. Each van is equipped with a fire extinguisher, first-aid kit, and car phone. Rides are provided weekdays between 8:00 a.m. and 5:00 p.m. Staff take 1 week off at Christmas and have five holidays throughout the year. Rides are provided approximately 250 days during the year, averaging 18 rides per day. Regular transportation satisfaction surveys show that the clients are very satisfied with the service. They stress to us that they would not be able to get to appointments without the service. Child Care Child-care is an important component of our program to assist mothers to access health care. The Women’s Intervention Program employs a successful former client as a child-care worker to baby-sit for clients’ children while the mothers attend health-related appointments. The mothers bring their children on the van to the WBI’s office. The children are cared for while the mothers keep their appointments. The children feel at home at the program office and contribute a home-like atmosphere for other clients at the program. Accompaniment Service WBI nurses accompany women to critical appointments when the client is unlikely to keep the appointment or she asks the nurse to come with her. Our nurses go to court for child custody hearings, go to doctors’ offices, and visit the women when they become patients in nursing homes, hospitals, or are jailed. The women appreciate this personalized service. These outreach visits provide nurses additional time for bonding and client teaching. Day Treatment A successful strategy to keep women in primary care has been the operation of a day-treatment program 3 days a week. Women in the day-treatment program are available to meet with the WBI nurse to do needs assessment and set up necessary appointments, to be taken to health-related appointments, and to meet with caregivers who come to WBI to find their hard-toreach clients. WBI’s day-treatment program is helpful to more than just the clients. By maintaining

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continuous contact with the women, WBI serves as a hub where other service providers can locate and meet with our shared clients. Sandwiches and juice are served for lunch, and each day there is a group session. Topics such as early intervention substance abuse counseling, parenting, self-esteem, and heath care issues keep women coming to the group sessions. Women also meet each other. They have formed firm friendships with others in circumstances similar to their own. The women provide a lot of support for one another. Once a week there is a craft activities group in which the women can make decorative items for their homes. Once a month, there is an outing such as a visit to the art museum or a picnic. These outings provide opportunities for enjoyment and pleasure without drugs. A lawyer is available to counsel women on legal issues as needed.

Personalized Nursing LIGHT Model of Care Clients generally have low self-esteem and do not perceive they are entitled to health care because, in some cases, they feel their health problems are a result of their actions. Once clients’ self-esteem has improved and they have the energy to keep appointments, nurses use their hyperlinking capability to make appointments for primary medical and mental health care. If bonding and attention to improvement of well-being do not occur first, attempts at linking HIV-positive substance abusers to care are likely to fail. The personalized LIGHT model is designed to assist women to improve their sense of well-being. Once well-being is improved, women have the interest and the energy to attend to their health-related needs. The personalized nursing LIGHT model, the model of care used in this study, is a model of the art of nursing inspired by Martha Rogers’s science of nursing. Dr. Rogers developed a science of nursing titled the Science of Unitary Human Beings (Rogers, 1986, 1990). She was a consultant in the development of our nursing practice model (Andersen, 1983). The focus of any nursing intervention within this perspective is to assist clients to improve their sense of well-being toward a goal of reaching their maximum potential.

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The name personalized nursing defines the focus of care as being an individual’s own identified focal concerns. Care is personalized to the person and the person’s perception of what care is needed. Interventions are unique and creative to facilitate meeting the client’s perceived needs. Nurses might make gravesite visits with grieving clients or provide dressings for wounds that need attention. Nurses do an individualized assessment and provide immediate care for the focal concerns of the moment that the client identifies. When clients are given attention and help with their focal concerns, they feel helped and their well-being improves (Andersen & Hockman, 1997). The model stresses that the path to optimal health and well-being lies within each person. Clients are given assistance and taught the LIGHT model as a process to improve their sense of well-being while remaining free of alcohol and drugs. An improved sense of well-being is associated with an ability to see more options and possibilities when confronted with life’s problems. Improved sense of well-being is also associated with a decrease in drug use and high-risk sexual behaviors associated with AIDS acquisition and transmission (Andersen & Hockman, 1997). The LIGHT model (a symbol and acronym based on Florence Nightingale’s lantern) gives direction to both the caregiver’s role and the client’s role in the healing process. The meaning of the acronym and the actual process used in both individual and group sessions by caregivers can be seen in Figure 1. The LIGHT intervention model has three objectives: (a) bond with the women and gain their trust, (b) assess their well-being and identify barriers to maximum well-being, and (c) teach the LIGHT model and help women plan their first step to improve their well-being. Bonding With Clients to Develop Trust The first step of the intervention process is to bond with the client. The women in the program have a wide variety of mental health diagnoses. Depression, schizophrenia, bipolar illness, and character disorders are common. These diagnoses can interfere with bonding, as women are suspicious of staff until they receive appropriate medical intervention including psychotropic medication. The process of bonding requires the

Facets of the Process

Role of Nurses and Caregivers

• Bonding

Love the client Intend to help Give care gently Help client • Assess wellbeing and improve wellidentify barriers being Teach a healing • Teach the LIGHT model process and help client plan the first step to deliberate pattern change Figure 1.

Role of Client Love yourself Identify a concern Give yourself a goal Have confidence and help yourself Take positive action

The LIGHT Model

nurse to be alert for clues in the client’s words, mannerisms, dress, and environment. The ability to transcend human boundaries and connect with another person in a spiritual way facilitates clients feeling understood. Nowhere is nursing more of an art than here. Experience teaches several techniques that may be useful. Some clients—those who turn inward with their pain, grief, or low self-esteem—may be reached through the nurse’s sharing of his or her own personal life experiences. Another medium that seems to work is the nurse’s use of metaphors or the arts to establish commonalty and touch the soul of the client. Intuition is another medium that quickly and effectively provides clues on how to touch a patient. Another bonding medium is action caring, an action in which the nurse goes out of his or her way to help the client. This is especially true when the action is inconvenient to the nurse because it demonstrates value and speaks louder than words. Using the LIGHT Model of Care to Promote Access to Care Other facets of the LIGHT model, assessment of well-being, and helping clients plan their first step to deliberate pattern change are used by the nurses after bonding has occurred. The women are assisted in improving their sense of well-being, so they have the energy to follow through on suggestions and appointments the WBI nurse gives them. The services

Andersen et al. / Nurses Decrease Barriers

provided by the WBI then facilitate the women’s access to and retention in primary care. Assessing Well-Being and Identifying Barriers After bonding with clients, an important aspect of the LIGHT model is to assess the client’s well-being and help the client improve it. To assess global wellbeing, the nurse asks each client how she feels about her life as a whole and to rate it on the Global Well Being Index developed by Andrews and Withey (1978). In cases in which a client is less than delighted with her life, the nurse asks, “Why?” The client’s answer helps identify barriers to maximum wellbeing. Clients are not always aware of their barriers to well-being, but these barriers to well-being are often also barriers to obtaining health care. In addition to helping clients identify and address painful areas in their lives and/or focal concerns (concerns of the immediate moment), the staff assists clients to identify their special talents. Experience has shown that each client has a talent or area of expertise or interest. When that area or talent is pursued, it is associated with a positive feeling of well-being. Nurses and other staff encourage clients to pursue their talents, and they provide tools for the client (paper, paints, etc.) when possible. When clients see themselves as talented people, valued by staff, they begin to see themselves as women worthy of health care. Teaching a Healing Process and Planning the First Step to Deliberate Change “Change happens. Directed change is the goal” (Rogers, 1990). The WBI Women’s Intervention Program staff focuses on facilitating directed positive changes. Many techniques can be used to encourage clients to take action to improve their sense of wellbeing. These include facilitating experiential learning, role playing, giving a client new information, demonstrating and teaching specific skills clients need to know to make changes in their lives, giving support as clients attempt to interact and behave in new ways, and noticing and promoting talents within clients. The possibilities are endless. The use of these creative interventions assists clients to take actions to help themselves. Clients have

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the answers inside themselves to overcome their barriers to well-being and their concerns. Nurses help clients plan their first steps to address their concerns. Once clients experience this process of helping themselves, they can repeat the process with future concerns.

Hyperlinking in Action: Improving the Receipt of Health-Related Services Now that we have described our service delivery model and its foundation in the personalized nursing LIGHT model, we turn to the program in action and the impact of hyperlinking. The federal Health Resources and Services Administration (HRSA) funded the WBI to assist HIV-infected, substanceabusing women to access health care. This Women’s Intervention Project is designated as a Special Project of National Significance under the federal Ryan White C.A.R.E. Act. During the first 4 years of the program (1995-1998), we have provided services for 125 HIVpositive women who have a history of substance abuse. Eighty-one of these were active participants during the 4th year of the program, October 1, 1997 to June 30, 1998. It is these 81 participants who comprise the sample for our discussion of the impact of our hyperlinking program. (Note: The number of subjects in the following analyses will, however, vary considerably because all women do not have data on all measures.) We periodically conduct structured interviews to assess clients’ health and service-related needs and status as well as to evaluate the program itself. The 81 women in our current sample represent fairly equally all 4 years of entry into the program: 26% from Year 1, 32% from Year 2, 20% from Year 3, and 22% from Year 4 (chi-square goodness of fit = 2.513, p = .473). Thus, the impacts that we will describe represent recent enrollees as well as women who have been retained in the program. That women who enrolled in the first years of the project are still active clients attests to the success of the program’s retention power. Client Characteristics

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Table 1.

Transition Matrix Showing the Percentage Distribution of 4,586 Van Ride Destinations as a Function of Starting Location

Starting Location

Residence

Medical Services

Destinationa Well-Being Institute 41.6 17.3

Other Services

Activities 2.7 5.5 5.2 4.4 15.5 4.6

Residence Medical services Well-Being Institute Other services Activities

63.7 76.3 62.7 53.5

49.6 7.3 11.9 6.9 13.4

20.1 12.8

6.1 6.1 6.6 5.9 4.8

Totalb

39.1

27.0

23.2

6.2

a. Row percentages add to 100%. b. The Total row represents the percent of all rides that went to each destination.

Characteristics of the women at time of enrollment illustrate very dramatically that they represent a critical subpopulation for special assistance. All but 1 of this sample were of minority background (96% were African American, and 3% were American Indian). The average age at entry into the program was 38. The majority of the women were neither married nor partnered: 55% were single; 37% were separated, divorced, or widowed; and only 8% were married. All but 2 were unemployed; 53% were considered disabled. Less than half (41%) lived in their own home or apartment, and 24% considered themselves to be homeless. In addition to substance abuse, 93% have been smokers. With respect to high-risk factors for spreading the disease, 51% have a history of drug injection, 48% have been engaged in sex work, and 57% have a history of sexually transmitted diseases. Crack cocaine was the predominant drug used, acknowledged by 90% of the sample. On average, these women began using crack at the age of 27. As for medical condition at intake, 67% rated their health as fair or poor; the nurses gave the same rating to 60% of these women. The CES-D eight-item depression scale was administered as a measure of psychological distress (Melchoir et al., 1993). The majority of the women (76%) scored above the cutoff point for significant distress. In addition, the nurses rated 60% of the sample as being of fair or poor mental health at time of enrollment.

hyperlink between sites on the Internet requires highspeed “connectivity,” our clients need connectivity to access the sites our nurses identify to address their needs. Transportation, a basic form of connectivity, was the major barrier to receiving services. Given the central role of transportation, we conducted an extensive review of that facet of the program. Logs of pickup location and destination for each client are maintained for each and every van run. In a 1year period—October 1996 to October 1997—we logged 4,586 rides. A “transition matrix” provides a succinct way to show the pathways of transportation between major destinations. This transition matrix is presented in Table 1. Overall, 27% of the rides were to medical services, 23% were to the WBI, and 11% were to other services and activities. The return home accounted for 39% of the rides. Transportation to medical services was primary, accounting for 50% of the rides originating from home. The next most frequent destination from home was the WBI (42%), where most of the counseling takes place. Home, of course, was the major destination after pickup from all other locations. Transportation was targeted toward necessary services. The number and variety of transportation varied from woman to woman according to need. Whether her need was infrequent or almost daily, the availability of transportation made it possible for her to obtain necessary services, especially medical and counseling services.

Overcoming the Transportation Barrier

Hyperlinking Clients to Medical Services

At entry into the program, 69% indicated that they needed HIV-related medical services. As the ability to

As one way of validating the WBI program’s success in assisting the medically underserved in

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Table 2. Services Received by 81 Multiple-Diagnosed Women Who Participated in the Well-Being Institute Program

Type of Service Transportation Group counseling Early intervention substance abuse counseling Mental health nursing counseling HIV-specific counseling Case management

Number of Times Service Received

Number of Minutes Spent in the Service

Percentage of Women Receiving This Service

Range

Mean

Range

74.1 58.0

0-178 0-40

19.0 4.4

0-6,597 0-3,340

836 366

50.6 50.6 30.9 29.6

0-65 0-31 0-3 0-6

6.1 2.9 0.5 0.6

0-7,170 0-705 0-210 0-780

520 70 33 38

obtaining medical services, we looked at the relationship between number of van rides to medical services as a function of prior medical service receipt. At the intake interview, women were asked if they had received medical services on learning of their HIVpositive status. Using a “no” response as an indicator of being initially underserved and a “yes” response as an indicator of initially receiving services, we used a t test to compare the mean number of WBI transports to medical services. The hypothesis was that the underserved (a “no” response) would use the WBI transportation facilities more often. The results supported this hypothesis. The initially served (N = 27) had, on the average, 13 transports to medical services, whereas the initially underserved (N = 17) had, on the average, 40 such transports (t = 2.14, p = .019, one-tailed). A needs assessment was part of the structured interview process. The women were asked both at intake and during the current evaluation period if they had needed and if they had received HIV-related medical services during the past 6 months. At intake, 69% needed services; 81% of those needing the services said they had received them. At evaluation follow-up, 75% said they needed these services; 97% of those needing the services said they received them during participation in the WBI program. The difference of 16% from intake to follow-up is significant (chi square = 5.027, p = .0125, one-tailed). The program is more than just transportation to medical services. Table 2 illustrates the extent of services received at the WBI site by the 81 women who participated in the Women’s Intervention Program during the 9 months from October 1997 to June 1998. More than half of the women participated in group counseling, early intervention substance abuse

Mean

counseling, and mental health nursing counseling. More than a quarter of the women received HIVspecific counseling and case management. As a further way to evaluate clients’ progress, the nursing staff rated clients at intake and during followup on their ability to follow through with referrals, to deal with access barriers, and to comply with medical advice. The mean ratings, on a scale of 0 (poor) to 4 (excellent) for the same women assessed both at intake and at follow-up during the evaluation period, are summarized in Table 3. From the nurses’ point of view, the clients improved significantly on the ability to follow through with referrals (paired t = 2.20, p = .017) and ability to deal with barriers (paired t = 3.46, p < .001). Although the change was in the appropriate direction, the paired t for compliance with medical advice was not significant (t = 1.55, p = .064). Finally, we looked at clients’self-evaluation of their psychological distress and well-being. The measure of psychological distress was the CES-D eight-item depression scale (Melchoir et al., 1993). For wellbeing, we used the Andrews-Withey scale (Andrews & Withey, 1978). The CES-D consists of eight ratings that are summed to evaluate one’s current psychological status. An example of an item is, “I felt that I could not shake off the blues even with help from my family or friends.” The client rates herself on each item using a 4-point scale from 1 (rarely or not at all during the last week) to 4 (most or all of the time, 5-7 days during the last week). The higher the total score, the greater the psychological distress. For our sample, the internal consistency reliability on the CES-D was .84. The Well-Being Scale consists of 18 items (the 2 items dealing with one’s current job were omitted because of irrelevance in this sample) using a 7-point

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Table 3.

Nurses’ Ratings of Clients’ Progress From Intake to Evaluation at Follow-Upa

Progress Area

N

Follow through with referrals Ability to deal with barriers Compliance with medical advice

Status at Status at Intake Follow-Up Mean SD Mean SD

37

1.7

1.02 2.2

0.79

40

1.1

0.99 1.9

0.99

42

1.5

1.06 1.9

0.94

Table 4.

Improvement in Psychological Distress and WellBeing From Intake to Current Follow-Up

Scale

N

Status at Status at Intake Follow-Up Mean SD Mean SD

Psychosocial distress (CES-D)a Well-beingb

41 48

19.6 71.5

6.56 17.4 7.83 16.55 82.7 15.75

a. Scores can range from 8-32; A score greater than 16 is considered severe. b. Scores can range from 18-126; 72 is the mid value.

a. Rated on a scale from 0 to 4, where 4 is excellent.

scale from 1 (terrible) to 7 (delighted). Items deal with satisfaction with various aspects of one’s current life, such as “what you are accomplishing in your life” and “the way you handle the problems that come up in your life.” The higher the total score, the greater the sense of well-being. For our sample, the internal consistency reliability on well-being was .86. The women who participated in our program showed significant improvement on both of these scales from intake to current follow-up. The means are presented in Table 4. On the CES-D, the paired t was 1.99, p = .026; on well-being, the paired t was 4.19, p < .001. An intervention program personalized to hyperlink clients to appropriate services according to individualized need can indeed have a positive impact.

The women’s ability to comply with medical advice, while moving in a positive direction, did not significantly improve (p = .064). An enhanced approach needs to be developed to make a positive impact on compliance. The WBI has shown that an intervention program, personalized to hyperlink clients to appropriate services according to individualized need, can indeed have positive effects. The important components of a program that is successful in decreasing barriers to health care in a population of multiple-diagnosed women can be summarized as follows: • •

Discussion The combined strategies of using a nursing model of care and delivering this care within a nursing care delivery system were successful in assisting multiplediagnosed women to obtain health care. Transportation was a key element contributing to the success of the program. The women were not only hyperlinked to appropriate services but also showed positive results with respect to well-being and psychological distress. Nurses initially hyperlinked women into healthrelated services. The women then developed skills to help themselves as their project participation continued. Nurses found that, at follow-up, women were significantly more able to follow through on referrals on their own (p = .017) and to deal with barriers to health care access (p = .001) than they were able to do at admission. Their sense of well-being also improved (p = .001), as did their psychological status (p = .026).

•

a realistic service delivery model, including the provision of transportation, based on a theoretically sound intervention model of care that attends to individualized needs, that is put into practice by nurses who are well connected to the services needed by the clients.

Future Directions To address the issue of adherence with medical advice, the WBI is developing an integrated approach that incorporates contractual relationships with an HIV medical clinic, a mental health clinic, and a substance abuse clinic. Through these relationships, we will create and conduct integrated plans of care for multiple-diagnosed women. Nurses will be charged with developing, implementing, and evaluating realistic, personalized medical adherence plans. They will use home visits, directly observed therapy, and other strategies. The multiple-diagnosed women will help develop their treatment plans. This strategy is intended to maximize their willingness to adhere to their

Andersen et al. / Nurses Decrease Barriers

medical treatment regimes with coaching and support from the integrated service team led by nurses.

Summary In summary, the Women’s Intervention Program of the WBI has developed a comprehensive program to locate HIV-positive, substance-abusing women to enroll them in primary medical and mental health care and to keep them retained in health care. This nursing service-delivery model is based on a unique model of care—the personalized nursing LIGHT model. The results of the model in practice demonstrate its success in hyperlinking hard-to-reach and hard-to-serve HIVpositive women with health care and other needed services and resources. In addition, these multiplediagnosed women have shown positive outcomes with respect to improved sense of well-being and decreased psychosocial distress. Acknowledgments. We are grateful to and acknowledge the generous support of the Health Resources and Services Administration, Special Project of National Significance Program (Barney Singer, director; Mirtha Beadle, deputy director), via HRSA Grant No. 5 U90 HA 0019-05.

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