Jia336221 202.207

Journal of the International Association of Physicians in AIDS Care (JIAPAC) Known to Be Positive But Not in Care: A Pilot Study From Thailand
Pratuma Rithpho, Deanna E. Grimes, Richard M. Grimes and Wilawan Senaratana 2009; 8; 202 originally published online May 4, 2009; J Int Assoc Physicians AIDS Care (Chic Ill) DOI: 10.1177/1545109709336221 The online version of this article can be found at: can be found at:
Journal of the International Association of Physicians in AIDS Care (JIAPAC)
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Journal of the International Association of Physicians in Known to Be Positive But Not in Care: Volume 8 Number 3 May/June 2009 202-207 # 2009 The Author(s) A Pilot Study From Thailand Pratuma Rithpho, MSN, RN, Deanna E. Grimes, DrPH, RN, FAAN,Richard M. Grimes, PhD, and Wilawan Senaratana, MPH, RN This study was designed to describe persons with HIV/ Almost 60% currently used recreational drugs. Reasons AIDS (PWHAs) in Thailand who have not disclosed for not disclosing their HIV status included that they their HIV status to the government HIV clinics to were still healthy (81.8%) and worried about stigma receive medical care. Objectives were to (1) demonstrate (77.3%). Two thirds will disclose when a serious prob- a way to access these persons, and (2) describe their lem occurs. This study demonstrates that this popula- characteristics, HIV status, reasons for nondisclosure, tion can be accessed and studied through NGOs and and problems related to their self-care. Two nongovern- that this population differs slightly from PWHAs in mental organizations (NGOs) serving the nonmedical Thailand studied at initiation of medical care.
needs of PWHAs were used. In all, 22 PWHAs partici-pated. Approximately 80% have known their HIV status HIV/AIDS; disclosure of HIV status; for more than 1 year and 30% for more than 5 years.
accessing medical care for HIV/AIDS; Thailand mortality rates.5 Initiating HAART at higher CD4counts reduces risks for HIV-related conditions such Providing optimal treatment and care to HIV- as peripheral neuropathy, anemia, and renal insuffi- infected persons has important advantages. Early ciency,1 non-Hodgkin's lymphoma, and AIDS-related initiation of highly active antiretroviral therapy neurologic conditions.6 Patients who periodically (HAART) is associated with lower morbidity and interrupt HAART have an increased risk of death mortality,1,2 even when the viral load is not fully sup- from any cause, as well as a higher risk for infectious, pressed.3 Patients who began therapy early in their cardiovascular, renal, and hepatic diseases as infection at higher CD4 counts have lower rates of opposed to staying on continuous therapy.7 death compared with those with the same CD4 There are public health reasons for providing count who defer HAART.4 Even in drug abusers, a early care. Early initiators of care may receive educa- difficult-to-treat population, those who started tion on how to prevent transmitting the virus and HAART at CD4 counts >350 cells/mm3 had lower prophylactic treatment for opportunistic infectionsand for comorbid conditions such as drug addiction,alcoholism, and psychiatric disorders that increase From the Chiang Mai University, Chiang Mai, Thailand (PR, the risk of transmitting HIV. Individuals who know WS); School of Nursing (DEG), Medical School (RMG), Univer- that they are HIV positive are less likely to engage sity of Texas Health Science Center at Houston, Texas.
in unprotected sex.8 Also, someone with a high viral None of the authors have a conflict of interest with regard to this load is far more likely to transmit HIV to a sexual Address correspondence to: Deanna E. Grimes, 6901 Bertner Knowing that early treatment is important is not sufficient as there is ample evidence that many, if not Known to Be Positive But Not in Care / Rithpho et al most, HIV-infected persons are late in receiving their characteristics, HIV status, reasons for nondi- treatment for HIV. This has been found in developed sclosure, and problems and needs related to their countries3,10 and in developing countries.11-15 Many persons who are late in seeking care are unaware ofor deny their risk factors and avoid being tested forHIV.16 These persons may seek care only when they are symptomatic. There are also a number of individ-uals who know that they are positive but choose to The study was approved by the Chiang Mai Univer- not receive care. Keruly and Moore showed that the sity Review Board. Informed consent was obtained time between learning that one is positive and decid- from study participants to tape-record them during ing to seek care was a median of 196 days and as long the interviews. To assure anonymity, participants as 1295 days.17 In another study, some persons took were identified by a number on the written material as long as 7 years after testing positive to consider and the audiotapes. Participation was completely themselves ready to begin treatment.18 voluntary and participants could withdraw at any Late entrants to care have been the subject of a time. This article reports the findings on the partici- number of studies. A French study showed that pants at the time of their being first recruited into the 42% of the group entered care only because they had study during May–August 2008.
an AIDS-defining event. Late entrants were morelikely to be older, to be migrants, to have children, Setting and Sample and to be in a steady relationship.11 A US study This study was conducted at 2 NGOs in Chang Mai, showed that men who had sex with men averaged Thailand. One NGO is a religious organization that <90 days between learning that one was HIV posi- provides nonmedical services to persons with HIV/ tive, while injection drug users took an average of AIDS including N-PWHAs. The other NGO is a greater than 2 years.17 Late entry to care was also community-based organization providing nonmedi- associated with lacking health insurance and being cal services to drug users. Both organizations provide male in another US study.10 Researchers in Thailand support groups, financial assistance, meals, and reported that late HIV diagnosis at entry to care was medical referrals to the populations they serve. Many independently associated with age more than 30 of those who receive services from these groups are years, being male, and being unemployed.19 These nondisclosed in the sense that they know that they studies and others like them have been necessarily are HIV positive but have not accessed medical care restricted to data obtained at entry to care.
and antiretroviral therapy (ART) through the govern- Little is known about those who know that they ment-provided health care system. These 2 diverse are HIV positive but have not entered care. These settings were selected to maximize the variability in persons are sometimes referred to as ‘‘nondisclosed characteristics of N-PWHAs.
persons,'' indicating that they have neither disclosed Inclusion criteria were male and female adults their HIV status to official public agencies nor have aged 18 years and older, living in Chang Mai prov- they entered care systems where their HIV-positive ince, who attend 1 of the NGOs but who did not par- status would become known to public agencies.
ticipate in any support group in the NGO. They have These persons will be referred to as nondisclosed been diagnosed as HIV positive and were not receiv- persons with HIV/AIDS (N-PWHAs) in this article.
ing HIV treatment or support from government hos-pitals or social services even though HIV careincluding HAART is provided free of charge to Thai The purpose of this pilot study was to identify N-PWHAs in Thailand and elicit their reasons fornot seeking care and the social, psychological, and Data were collected through interviews with the physical needs that might have interfered with their N-PWHAs by a nurse who had volunteered to pro- seeking care. Specific objectives were to (1) demon- vide nonhealth-related services at both of the study strate a way to access these persons through nongo- settings prior to the study's initiation. She asked vernmental organizations (NGOs), and (2) describe N-PWHAs at the NGOs, many of whom she knew, Journal of the International Association of Physicians in AIDS Care / Vol. 8, No. 3, May/June 2009 to participate. These participants referred others to Demographic Characteristics of 22 the investigator. The length of interviews ranged Nondisclosed PWHAs in Thailand from 30 minutes to 2 hours. All interviews were audio-recorded, and transcribed verbatim.
A structured interview guide was used to assess the demographic characteristics (age, gender, race,religion, education, marital status, number of chil- Age (years; range 18-51 years, mean ¼ 29.91, SD ¼ 7.11, median ¼ 30) dren, occupation, income, insurance coverage, and support system) of the respondents and their HIV status. Open-ended interviewing was used to assess the N-PWHAs' reasons for not disclosing their HIV status to the government health care system and problems the respondents experience in caring for themselves (self-care). The descriptive findings from this pilot study are reported as frequencies.
Indigenous people Using the NGOs to access these patients was a feasi- ble approach to obtaining the desired information.
These organizations provided nonmedical services to the patients, including a feeding program.
Postsecondary school Because of the social services, the N-PWHA were Secondary diploma regular attendees at the organization and had devel- Postsecondary diploma oped a trust relationship with the staff and volun- relationship allowed the researcher access to the A total of 22 persons entered the study. These N-PWHAs were young (mean age was 30 years) and 68.2% male. All but 3 persons were Thai citizens and 19 practiced Buddhism. Half of the N-PWHAs had very low or no education and nearly half were unemployed. A majority were married with 1 or 2 children. The average monthly income was 4068 Baht (US$123.00); the median was 3000 Baht (US$91.00). More than 90% had some type of health Income per month (Baht; range 0-23 000, mean ¼ insurance and would be eligible for care in the gov- 4068, SD ¼ 4962.47, median ¼ 3000) ernment system if they were willing to disclose their HIV status. Two study participants were migrants from other countries and, thus, not eligible for ser- >More than 10 000 vices from the Thai government (see Table 1).
Health insurance coverage The participants' HIV status is noted in Table 2.
Universal coverage More than 80% have known their HIV status for over No health insurance 1 year and 30% have known it for over 5 years. Manyof these individuals have accessed the private care Abbreviation: PWHA, persons with HIV/AIDS.
system at various times in their infection for HIVcare as can be seen from the fact that 64% have year. Sixty percent report that they were infected known their CD4 counts at some time, although half through sexual transmission while the others of them have not had it measured during the past believed it was through injecting drugs. Thirty-six Known to Be Positive But Not in Care / Rithpho et al HIV Status of 22 Nondisclosed PWHAs As many as 86% of these participants continued to live in poor socioeconomic environments and practicebehaviors that have a negative impact on their lives and the lives of those around them. Almost 75% had stress in their family and almost 70% stated they had physicaland health problems related to their HIV status.
Years since knowing HIV/AIDS diagnosis (range 1 month-11.5 years: mean ¼ 3.3: SD ¼ 2.96,median ¼ 2.75)<1 years This study shows that, while nondisclosed individu- More than 10 years als may not be involved with the formal medical care Source of HIV infection (participant's perception) system, they may be using the nonmedical services of Sexual transmission NGOs, and these institutions provide an access Injecting drug use CD4 lymphocyte count known by participanta point for reaching this population. The characteris- tics of these N-PWHAs can be compared with the PWHAs who have been studied in Thailand at entry Have taken antiretroviral therapy at some time into care. There are some similarities and differ- ences. In this study, the median age of 30 years and Have experienced opportunistic infections (OIs) the distribution of the population by marital status are similar to that of HIV-positive persons entering care in 7 public hospitals in Southern Thailand. Dif-ferences are observed in gender (68% male vs. 51% Abbreviation: PWHA, persons with HIV/AIDS.
a At some time within the past 3 years.
male in Southern Thailand); employment status(45% unemployed vs. 26% in Southern Thailand);and in income (82% earning <5000 Baht/month vs.
percent have experienced an opportunistic infection 42% in the Southern Thailand study).19 The partici- and 18% have taken ART that they have purchased pants in this study (median age of 30 years) were for themselves through the private system (3 because younger than a group testing positive for the first of opportunistic infections and 1 during pregnancy) time at a university hospital in Bangkok (median age so as to avoid the disclosure that would be required 35.5 years).20 The participants in this study reported if they accessed the government health system.
a much longer time since HIV diagnosis (more than The majority of the participants explained their not 80% have known their HIV status for over 1 year and seeking care by saying that they were still healthy 30% have known it for over 5 years) than reported by (81%) and will seek care when a serious problem studies of patients who were studied at entry to care occurs (68%). Seventeen (77%) were concerned with (usually 50% seek care in less than 6 months after the stigma associated with disclosing their status.
diagnosis).18,19 Therefore, finding this population Nearly one third of the participants stated that they through NGOs may result in accessing them at a crit- were dissatisfied with the government hospital as a ical point when ART may be most effective. In addi- reason for not seeking care. Six respondents reported tion, this approach of using NGOs could be easily not valuing life or health while 5 persons thought they implemented in other locales.
were ineligible for the government health system. The The kinds of problems that were uncovered by reasons varied as to whether the participant was a this study illustrate the complexity of the issues sur- drug user or not, although the sample size is too small rounding those who know that they are HIV positive to test the differences (see Table 3).
but do not seek care. The N-PWHAs in this study Table 4 summarizes the needs and problems had significant social and economic problems that expressed by the participants as interfering with would interfere with their ability to access and to their self-care. These are grouped into 4 categories: remain in care. Many of them were quite poor, behavioral, socioeconomic, family situation, and homeless, in poor partnership/family circumstances, health/HIV status problems. All participants were and had poor health. The social stigma against experiencing problems in 1 or more of the categories.
HIV-infected persons is another barrier and must Journal of the International Association of Physicians in AIDS Care / Vol. 8, No. 3, May/June 2009 Reasonsa for Not Disclosing HIV Status to Receive Treatment for HIV by Drug Use Given by 22 Nondisclosed PWHAs in Thailand Reason for Not Disclosing HIV Status Number of Participants (% of Group) Nondrug Users (n ¼ 9) Drug Users (n ¼ 13) Stigma of being HIV positive Will disclose when a serious problem occurs Dissatisfied with government hospital Do not value health/life No health insurance a Participants identified more than one reason.
Needs and Problems Impacting Self-Carea of 22 Nondisclosed PWHAs in Thailand Needs/Problems Related to Self-Care Behavioral (unsafe sex, alcohol, smoking and drug use, poor hygiene) Socioeconomic (homeless, no job, no money, no education, immigrant status) Family situation (couple discordance, no family, family/partner doesn't know participant's HIV status) Health/HIV status (pregnant, not receiving prenatal care, weight loss, opportunistic diseases, have drug resistant HIV, many physical symptoms) a Participants have problems in more than 1 category.
be dealt with through public education and leader- accessing the private system to better understand ship. Given that 41% of the interviewees were IDUs, their reasons and needs. Another follow-up study treatment of this concurrent condition may be nec- might investigate whether there is a high-resource essary if the full benefits of HIV care are to be rea- population not receiving any type of care and whether lized. This is particularly illustrated by the fact that they can be reached through organizations other than nearly half of the IDUs said that one of their reasons the NGOS serving low-resource populations.
for not seeking care included their lack of concern Although N-PWHAs, because of their desire to for the value of their lives and health.
remain anonymous, are difficult to identify, the Although this pilot study of 22 persons cannot be approach employed in this study was successful in generalized to the HIV population of Thailand that is reaching some of them. The nurse/investigator found not in care, it does point out some gaps in our under- that this population does access the community-based standing of who does not seek care and provides NGOs that provide for their immediate needs. The directions for future research. One area of research researcher also learned that the N-PWHAs desired is to examine the use of NGOs to reach N-PWHAs to communicate with her and were very open to sug- in other locations in Thailand and to identify diffi- gestions that might help them. Such agencies might culties experienced by patients in other locales. It be the ideal forum for health care workers to reach was surprising that the 22 persons in this study were PWHAs to provide prevention education, counseling very poor (85% had incomes below 5000 baht per for change, and referral for ART. This has implica- month—average per capita income in Thailand is tions for medical care systems in many countries >7000 baht per month) yet did not seek free medical working to bring HIV-infected patients into early care. The reasons for failing to seek care seem to treatment to improve patient outcomes.
reflect concerns about confidentiality and stigma.
Another research area is to examine whether thereare individuals with significant financial resources who do not seek care or choose to use the private sec-tor for care rather than run the risk of disclosure The primary author would like to thank all partici- through the public system. One could study those pants and the NGOs and their staff. This study was Known to Be Positive But Not in Care / Rithpho et al provided through the Thailand Nursing Council and 9. Gray RH, Wawer MJ, Brookmeyer R, et al. Probability of the Office on Higher Education, Thailand Ministry HIV-1 transmission per coital act in monogamous, het- of Education. Preparation of this manuscript was erosexual, HIV-1 discordant couples in Rakai, Uganda.
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