HIV Positive But Not in Care

Abstract

Twenty-two persons in Northern Thailand who knew of their HIV positivity but were not in care were identified. They had significant medical, economic, behavioral, and family problems. A nurse researcher carried out a 6-month intervention with them to (1) assess whether they would remain in contact with the researcher for 6 months and (2) assess whether they would make positive changes in their lives. All 22 participants remained in contact for 6 months. A 5-step intervention process resulted in substantial improvements in their lives. Eleven patients entered care. Five needed immediate antiretroviral therapy (ART) and improved their CD4 counts. Six others established primary care relationships for non-HIV care. Twelve obtained legal, full-, or part-time employment. Eight disclosed to family members. Nine participants and/or family members entered counseling. Twelve persons publicly disclosed themselves. Twelve reported reducing or stopping substance abuse. Of 4 sex workers, 2 ceased engaging in that work.

Introduction

A previous article reported on 22 persons from Chiang Mai, Thailand, who knew that they were HIV positive but did not enter medical care even though medical care was easily accessible in the Chiang Mai area and is free for all Thai citizens. The article also reported on a method for identifying nondisclosed persons with HIV/AIDS (N-PWHA) through nongovernmental organizations (NGOs). These N-PWHAs had not disclosed their HIV status except for some who had disclosed at the NGO that they attended. The article also reported on the reasons that these persons gave for choosing not to enter care. These were a judgment that they were still healthy and did not need care, feeling stigmatized, dissatisfaction with services provided by the government health system, putting a low value on their health and/or life, and not being a Thai citizen. These N-PLHWAs had a number of behavioral health problems such as unsafe sex practices, substance abuse, and tobacco use. They were also isolated from families or without family, were discordant with regard to their sexual partners, and/or had not disclosed their HIV status to partners. Some of them had significant socioeconomic problems including homelessness, lack of access to means of maintaining personal hygiene, very low income (median was US$3.00 per day), low education or being unable to document Thai citizenship. Their significant health problems included pregnancies without prenatal care, weight loss, and multiple opportunistic infections. ¹

These N-PWHAs clearly were a high-risk population who were distrustful of the health care system and government and were living in isolation. However, they were in great need of services and assistance. Therefore, the nurse researcher carried out an intervention with these N-PWHAs for 6 months to help them improve their lives and examined 2 questions during the process: (1) Would these N-PWHAs remain in contact with the researcher for an extended period of time? (2) Would these N-PWHAs make positive changes in their lives? This follow-up article reports on a process for overcoming distrust and assisting these persons to deal with their problems and discusses the outcomes from that process.

Methods

The nurse researcher, a volunteer with 2 NGOs, contacted the N-PWHAs served by the NGOs and/or others who were referred by these N-PLHAs. She obtained their informed consent to participate in the study. The nurse researcher followed a 5-step process. First, she conducted initial, nonjudgmental interviews that allowed the N-PWHA to discuss whatever issues were considered important to them and their reasons for not entering care. This process allowed the nurse to assess their social, family, and economic needs. This process was repeated during the 6 months of the study. The interviews were mainly directed by the N-PWHA with only modest guidance from the nurse researcher. The N-PWHA sometimes challenged the nurse researcher’s intentions. For example, some tested her reaction by injecting drugs in her presence. These interviews sometimes occurred in the NGO and at other times in locations selected by the N-PWHA. The expected outcome of this phase of the study was an assessment of the N-PWHA’s perception of their needs and the nurse’s perception of their needs. This process also developed a level of trust because of the nurse’s acceptance of the N-PWHA as they presented themselves and her not attempting to change them.

During the second step in the process, the nurse researcher worked to help each person meet his or her basic needs. This was often accomplished by providing minor assistance such as giving hygienic products to them, bringing and sharing meals with them, transporting them for short distances, and giving over-the-counter medication to alleviate minor symptoms such as diarrhea, fever, headaches, and itching. This enhanced the trust levels of the N-PWHAs and allowed the nurse to be seen as a helper. The third step was to begin an education process that was directed by what the N-PWHA had expressed as major problems in their lives. For example, patients who expressed an interest in accessing care were educated about antiretroviral medications and their potential for restoring health. Sex workers who wished to leave that life were provided with information about where they could go to enter a safe house that would also provide them with employment, regular meals, and a place to sleep.

The fourth step was to assist the N-PWHAs in making decisions to change their lives. At this point, the nurse had become a trusted confidant whose advice and knowledge was sought by the N-PWHAs. For example, the nurse counseled some N-PWHAs on strategies that they might use to disclose their HIV status to family members or partners. She was then available to counsel and educate family members and partners after the disclosure was made by the N-PWHA. One patient who abused alcohol and also had diabetes made the decision to quit using alcohol after being educated about its effect on his diabetes. The nurse was then a source of support in his abstinence from alcohol.

The last step in the process was to evaluate the outcome of this intervention. The expected outcome was that at least 1 health-enhancing change would occur in the N-PWHAs during a 6-month period. These outcomes would be different for each individual but would be compared against the original problems that were identified in the nursing assessment in step 1 discussed in the preceding paragraph.

This description reads as if it was a linear process. However, it took each person a different period of time to go through the process. Some had relapses in their behavior changes and had to repeat some of the steps. Some developed new problems during the course of the study which required repetition of the earlier steps for the new problems. Evaluation of changes also was a continuing process and change was often gradual. However, all 5 of these steps were followed with all the N-PWHAs.

Results

The demographic characteristics of the patients were described in the previous article. ¹ The first research question for the current study, would these N-PWHAs remain in contact with the researcher for an extended period of time, was answered positively. The nurse researcher was able to meet with the N-PWHAs 2 to 3 times per month for at least 6 months. Remarkably, none of the study participants dropped out of the study. This seemed to be related to the trust level that was developed over the course of the study. As an evidence of this, N-PWHAs who would only meet with the nurse in public places at the beginning of the study were comfortable in inviting her to their homes as the study progressed.

The second study question, would these N-PWHAs make positive changes in their lives, was also answered affirmatively. Table 1 shows the problems that were expressed by the study participants and/or identified by the nurse researcher. All 22 of the participants at the beginning of the study had not sought care from the Thai HIV health care system. Of these, 2 were unable to prove their Thai citizenship so they were not eligible for care. However, the nurse researcher put them in contact with an NGO that provided health and other services for non-Thai people. Of the remaining 20, 9 persons entered either private or public care for their HIV infection. Of these, 6 met the Thai criteria for initiating antiretroviral treatment (CD4 count of <200 cells/mm³) and began therapy. Five of these had initial and follow-up CD4 counts during the 6-month study. Their counts increased by 64, 114, 118, 129, and 178 cells/mm³ by the end of the study. Six others made contact with a primary health care provider for their non-HIV-related care.

Table 1.

Outcomes of the Problems Experienced by N-PWHAs

Problems Identified	Number Reporting the Problem	Outcome of the Interventions
HIV positive but not in care	22	9 entered care in the governmental or private health care systems and 2 non-Thai citizens were connected with an NGO for HIV-related care and services
Needing antiretroviral therapy but not receiving it	Unknown because not all had received a CD4 count	6 began receiving 3 drug therapy and 5 of those had received it long enough to show improvement in their CD4 counts
Not having a source of regular medical care	22	9 entered HIV care and 6 established a relationship with a primary care provider for non-HIV-related care
Unemployed, irregular employment, or illegal employment	18	12 found legal, part-time, or full-time work
Undisclosed to certain family members	22	8 participants increased the number of family members to whom they disclosed their HIV status
Not publicly disclosed with regard to their HIV status	22	12 became HIV/drug community educators for agencies
Family members expressing a need for counseling and education	9	Family members of 9 participants received counseling and education services
Abusing drugs and/or alcohol	21	2 reported stopping drug use, 4 said they had reduced drug use, 6 said that they had stopped using alcohol
Smoking	16	2 reported quitting smoking
Engaging in sex work	4	2 quit sex work and entered a sheltered workshop
No continuing connections with governmental and nongovernmental HIV services	22	All 22 established stronger connections with these organizations and 12 became HIV/drug abuse community educators

Abbreviations: N-PWHA, nondisclosed persons with HIV/AIDS; NGO, nongovernmental organization.

Of the participants, 8 disclosed their HIV status to family members; 2 individuals reported that they had stopped using drugs, 2 quit smoking, and 6 said that they had quit abusing alcohol. Nine of the participants requested that the nurse educate and counsel family members about their HIV infection. The 2 non-Thai citizens who had been supporting themselves through sex work were able to quit that work and enter a sheltered workshop that provided them with food, shelter, and a small income.

Only 4 of the 22 participants had regular, legal employment at the beginning of the study. Of the other 18 participants, 12 found regular employment of some kind by the end of the study. Some were employed full or part time by NGOs in Chiang Mai to provide drug or HIV education to youth. All 22 of the participants had not publicly disclosed their HIV status at the beginning of the study. By the end of the study, 8 were conducting HIV and drug abuse education programs in Chiang Mai where they lived. Four participants who were from small towns outside of Chiang Mai had done public education sessions in Chiang Mai but were still publicly undisclosed in their home communities. At the beginning of the study, all 22 were only connected with NGOs as recipients of services. By end of the study, all had developed strong connections with both government organizations and/or NGOs, such as HIV/AIDS programs, organizations for drug users, minority service organizations, or migrant networks. They had become volunteers or employees.

Discussion

The recent article by Gardner et al noted that failing to initiate HIV care after learning of one’s HIV positivity is common. It suggested that as many as 230 000 persons in the United States knew that they were HIV infected and had not yet entered care. ² The previous article suggested that these individuals could be identified and contacted through NGOs serving HIV-positive persons and by referral from other HIV-positive individuals. ¹ This study demonstrated the value of reaching out to nondisclosed HIV-infected persons. It showed that gaining the trust of these persons and assisting them with their everyday problems and consistently meeting, counseling, and educating them could create significant changes in their lives including engaging in HIV care. This process is labor intensive and requires a health care provider who is sensitive, nonjudgmental, and aware of not only health care needs but also community resources for meeting nonmedical needs. However, the ability to dramatically alter lives is impressive. It is not clear whether this intervention process is replicable in other settings, but these impressive findings suggest the need for similar studies in other communities.