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At the time of the study, Li Li, Sung-Jae Lee, and Mary Jane Rotheram-Borus were with the University of California, Los Angeles, Semel Institute Center for Community Health. Chuleeporn Jiraphongsa, Siwaporn Khumtong, Sopon Iamsirithaworn, and Panithee Thammawijaya were with the Thai Ministry of Public Health, Bureau of Epidemiology, Nonthaburi, Thailand.
Requests for reprints should be sent to Li Li, University of California, Los Angeles, Semel Institute Center for Community Health, 10920 Wilshire Blvd., Suite 350, Los Angeles, CA 90024 (lililili/at/ucla.edu).
. People living with HIV (PLH) in Thailand face multiple stressors. We examined findings from a randomized controlled intervention trial designed to improve the quality of life of PLH in Thailand.
. A total of 507 PLH were recruited from four district hospitals in northern and northeastern Thailand and were randomized to an intervention group (n = 260) or a standard care group (n = 247). Computer-assisted personal interviews were administered at baseline, 6, and 12 months.
At baseline, the characteristics of PLH in the intervention and the standard care condition were comparable. The mixed effects models used to assess the effect of the intervention revealed that PLH in the intervention condition reported significant improvement in their general health (β = 2.51, P = .001) and mental health (β = 1.57, P = .02) over 12 months, compared to those in the standard care condition.
We demonstrated successful efficacy of an intervention designed to improve the quality of life of PLH in Thailand. Interventions must be performed in a systematic, collaborative manner to ensure their cultural relevance, sustainability, and overall success.
People living with HIV/AIDS (PLH) in Thailand face multiple challenges, including coping with HIV-related disclosure, stigma, and maintaining positive family relationships. HIV disclosure has been identified as a key stressor for PLH in Thailand, with disclosure to children being only 20%,1 yet 85% to partners.2,3 When PLH do not disclose their serostatus, the odds of becoming depressed increase threefold, similar to the rate when family members are ashamed of an HIV-positive adult.4 Disclosure is also a key issue in Thai HIV support groups.5 Once serostatus has been disclosed to partners and caregivers, treatment becomes a challenge for the entire family.
In addition to disclosure, it is necessary to address stigma as an HIV-related stressor. We have documented a high level of perceived stigma in Thailand and associations with other challenges, including a significant association between stigma and depression.6 PLH in Thailand are also challenged to maintain general health routines,7 including medical visits, prophylactic treatment of symptoms (e.g., HCV, pneumonia, and tuberculosis),8 adherence to antiretroviral therapy (ART),9 knowledge of course of disease, and effective communication with doctors.
Despite these multiple stressors on quality of life, other factors have been shown to have a positive effect on illness management. For example, Thailand is a strongly family-oriented society and families in Thailand are tightly knit, where good family functioning becomes an even more critical factor in an individual member’s well-being. Therefore, family social support may help PLH increase adherence to ART and decrease their rates of depression. 9,10 PLH need information about how their children may respond to their illness, how to parent when ill, how to maintain positive family routines, and how to generate positive parental bonds with their children. Improving these factors is hypothesized to improve PLH’s quality of life as well as their children’s long-term adjustment.11–13
Past behavioral interventions in Thailand framed HIV as an individual stressor for PLH.14,15 In order to address these multiple negative and positive factors PLH and their families face in Thailand, we mounted a randomized controlled intervention trial in northern and northeastern Thailand. Based on the work of Rotheram-Borus and colleagues, 13,16–21 we identified common factors, processes, and principles shared across evidence-based interventions22–24 and adapted them to address the specific needs of PLH in Thailand. This study presents the findings based on data collected at baseline, 6, and 12 months to assess the efficacy of a cognitive-based intervention designed to improve the quality of life of PLH.
Baseline data were collected in 2007 from four district hospitals in the two regions (two district hospitals per region). Initial screenings of PLH were conducted in the district hospitals and performed by healthcare workers and research staff specifically hired for the study. Once PLH had been screened and had agreed to participate in the study, written informed consent was obtained.
Following informed consent, a trained interviewer administered the assessment, using Computer Assisted Personal Interview (CAPI). During the interview, PLH were asked about their demographics, including age, gender, annual income, and educational status, and questions about their perceived stigma, social support, and depression. A total of 507 PLH voluntarily participated in the assessment. The refusal rate was approximately 5% across the four study sites.
Upon completion of the baseline assessment, PLH were randomized to the intervention condition (n = 260) or the standard care condition (n = 247). PLH in the intervention and standard care conditions were assessed at 6 months and 12 months. All participants received 300 Baht (equivalent to $10) for their participation in each of the assessments.
Adaptation of the core elements of the U.S. intervention to the Thai setting was achieved through a series of workgroups involving the U.S. research team, the Thai research team, and healthcare providers from provincial and district levels. By applying common intervention factors, processes, and principles,22–24 the workgroups developed the intervention sessions to fit the Thai context. Each session was participatory and was designed to focus on one or two challenges faced by PLH and their families.
Buddhism, which is the religious affiliation of 95% of the Thai population,25 played a key role in framing the intervention tools and activities. In particular, the pragmatic, empirical aspects of Buddhism proved useful in framing the intervention contents and activities; its emphasis on personal responsibility, its support of personal betterment in the present time, and its attention to impermanence and change all played a key role in framing the intervention. Across all sessions, key intervention tools were framed in a culturally relevant and acceptable way to ensure intervention acceptability. Buddhism advocates self-awareness, or being present. For example, the Feeling Thermometer was framed as an effective tool to help participants understand their current feelings and emotions, thus informing them of their present state (being self-aware). The application of the Feeling Thermometer made this concept more tangible and concrete. The Feel-Think-Do (FTD) model was adapted to promote a positive cycle of cause and effect, a concept closely linked to positive thinking in dealing with HIV-related challenges as well as related to Buddhist philosophy.
The three modules from the U.S. intervention (HIV-related stressors; Improving Health and Mental Health; and Improving Family Adjustments) were adapted to four modules in the Thai intervention delivered over 13 weeks (Healthy Mind; Healthy Body; Parenting and Family Relationship; and Social and Community Integration). Module 1 (Healthy Mind) included four weekly sessions: 1) Emotional regulation while living with HIV; 2) Positive thinking and doing; 3) HIV disclosure; and 4) Stress management. Module 2 (Healthy Body) had three sessions: 1) Medication adherence and access to care; 2) Prevention of HIV transmission to others; and 3) Self care and healthy daily routines. Module 3 (Parenting and Family Relationship) consisted of the sessions on 1) Family roles and relationships; 2) Parenting while ill; and 3) Long-term plans with family members and children. Module 4 (Social and Community Integration) included two sessions: 1) Community participation and support; and 2) Employment/working while ill. A detailed intervention manual is available online (see http://chipts.ucla.edu/interventions/manuals/Entire_Sessions.pdf).
All the scales used in this study were either validated previously among Thai samples or developed locally by the Thai Department of Mental Health. Prior to launching the main trial, we conducted a Phase 1 study to pilot all measures to ensure scale reliability and validity.
The main outcomes measures were adapted from the Medical Outcomes Study HIV Health Survey (MOS-HIV) instrument.26, 27 Three subscales from the MOS-HIV (general health, mental health, and physical health) were used in this study:
General health was assessed by the MOS-HIV general health subscale, consisting of five items.27,28 First, PLH were asked to rate their current health by reporting their general perception of overall health status (1 = excellent to 5 = poor). PLH were also asked to report their general perception of health (1 = definitely true to 5 = definitely false): 1) I am somewhat ill; 2) I am healthy as anybody I know; 3) My health is excellent; and 4) I have been feeling bad lately. The four-item subscale was transformed into a 100-point scale (higher score reflecting better general health) with an acceptable internal consistency (Cronbach’s α = 0.72).
Mental health was assessed by the MOS-HIV health distress and emotional well-being subscales, consisting of eight items.27,28 PLH were asked to rate their level of distress and emotional well-being in the past month (1 = all of the time to 6 = none of the time): 1) How much of the time have you been a nervous person? 2) felt calm and peaceful; 3) felt downhearted and blue; 4) felt down in the dumps that nothing could cheer you up; 5) felt weighed down by my health problems; 6) felt discouraged by your health problems; 7) felt despair over your health problems; and 8) were afraid because of your health. The eight-item subscale was transformed into a 100-point scale (higher score reflecting better mental health) with a high internal consistency (Cronbach’s α = 0.85).
Physical health was assessed by the MOS-HIV physical functioning subscale, consisting of six items.27,28 PLH were asked what activities they might do during a typical day. They were asked to report how much their health limited these activities (0 = not limited; 1 = marginally limited; 2 = greatly limited). The six items were: 1) vigorous activities such as lifting heavy objects, running, or participating in strenuous sports; 2) moderate activities such as moving a table or carrying groceries; 3) walking uphill or climbing; 4) bending, lifting, or stooping; 5) walking around for one block; and 6) eating, dressing, bathing, or using the toilet. The subscale was transformed into a 100-point scale (higher score reflecting better physical health) with a satisfactory internal consistency (α = 0.81).
Information on background characteristics, including gender, age, education, annual income, and years since HIV diagnosis, was collected from PLH at the baseline interview.
Intervention effect was assessed by comparing the difference in levels of a particular outcome measure between the intervention and the standard care condition over 12 months. The trajectories of outcome levels over 12 months were also compared by intervention status.
Depression was assessed with a 15-item depressive symptomatology screening test that was developed and used previously in Thailand.29 These questions were asked about problems that had bothered participants in the past week (e.g., feeling depressed most of the time; feelings of hopelessness or worthlessness; loss of self-confidence), with response categories from 0 (not at all) to 3 (usually [5–7 days a week]). A summative composite scale was developed, with a range of 0 to 45 and an excellent internal consistency (Cronbach’s α= 0.91).
HIV disclosure was a single measure based on the extent (0 = no one, 1 = some, 2 = all) to which PLH disclosed their serostatus (e.g., sexual partners, co-workers, family members outside the household, healthcare workers, village leaders). This measure was previously used and validated in Thailand.30 Based on eight questions about HIV disclosure, a summative composite scale was developed, with a range of 0 to 16 (Cronbach’s α= 0.84).
Internalized shame was measured as a subscale of HIV-related stigma, based on the work of Herek and Capitanio31 and validated by the Thai investigators in Nakhon Ratchasima Province, Thailand.32 The subscale was based on nine items (e.g., I am punished by evil; my life is tainted; I am a disgrace to society). Response categories ranged from 1 (strongly disagree) to 5 (strongly agree). Composite scores were created by combining all the night questions (range = 9–45, with α value of 0.83).
Social support was constructed based on the Medical Outcomes Study Social Support Scale.33 The scale reflects tangible social support, and consists of four items: 1) someone to help you if you are confined to bed; 2) someone to take you to a doctor if you need it; 3) someone to prepare your meals if you are unable; and 4) someone to help you with daily chores if you are sick. Responses to individual items ranged from 1 (none of the time) to 5 (all of the time). This summative composite score ranged from 4 to 20, with a higher score indicating a higher level of social support (Cronbach’s α = 0.88).
Family functioning was assessed with the Thai Family Functioning Scale (TFFS), which was adapted from the Family Assessment Device (FAD) developed by the Butler/Brown Family Research Group.34 Consisting of 30 items (e.g., family members hardly expressed their love and care; I could not tell what my family members felt by the words they spoke), it is scored on a 0 (never) to 3 scale (always). A summative composite family functioning score was developed, with a range of 0 to 90, with a higher score reflecting better family functioning (Cronbach’s α= 0.92).
Prior to estimating the effect of the intervention on quality of life measures, exploratory data analyses were performed to examine data patterns. We estimated mixed-effect models to fit each PLH’s outcome measures with the intervention effect, and potential covariates were included in the models. These models made it possible to follow individual PLH trajectories over 12 months. The Proc Mixed Procedure in SAS 9.1.3 (SAS Inc., Cary, NC) was used with an autoregressive covariance structure to account for repeated measures (12 months). The correlations among PLH in the same family were taken into account by including random intercept and slopes. The time variable indicated the change in the outcome measure in the standard care condition over 12 months, and the intervention by time variable indicated the change in the outcome measure in the intervention condition (intervention effect) over the 12-month period.
For each quality of life outcome, the key variables included the intervention as the main predictor of interest after adjusting for background characteristics, baseline outcome levels, and other covariates associated with the outcomes at baseline assessment.
Table 1 highlights the baseline characteristics of PLH randomized to the intervention and standard care conditions. A majority of PLH in the study were women (67.2%) with a mean age of 37.4. The high percentage of women in the sample reflects the result of the heterosexual transmission in the region, with a large proportion of women who lost their husbands due to AIDS and subsequently finding out about their HIV status. Most of the sample had less than a high school education (85.4%), and the majority had an annual income of less than 35,000 Baht ($1000 US). The average year since HIV diagnosis was 8 years.
Comparison of baseline characteristics across intervention status revealed that there were no significant differences in gender, age, education, annual income, or years since HIV diagnosis. Similarly, we found no difference in depression, HIV disclosure, internalized shame, social support, or family functioning between the intervention and the standard care condition, suggesting that the randomization resulted in well-balanced groups. For the outcome of interest, we found no significant difference in mental health and physical health between the intervention and the standard care condition. For general health, however, PLH in the standard care condition reported a slightly higher general health score, compared to the intervention condition. This baseline difference was controlled for in the multivariate analysis.
Table 2 presents the baseline correlations across intervention status, demographics, and the selected outcome measures. General health was negatively correlated with depression and internalized shame, and positively correlated with social support and family functioning. Mental health was negatively correlated with being female, and was positively correlated with social support and family functioning. Physical health was positively correlated with income, social support, and family functioning. Physical health was negatively correlated with internalized shame and depression.
In addition, there were significant relationships among depression, internalized shame, social support, and family functioning. Depression was positively correlated with internalized shame, and negatively correlated with social support and family functioning.
Table 3 summarizes the intervention effect among PLH over 12 months for each of the outcome measures. Figure 1 illustrates the trends in each outcome measure over 12 months by intervention status. The mean estimates (and 95% confidence limits) are presented. For general health outcome, we found significant associations between general health and depression, internalized shame, and family functioning. Adjusting for the baseline difference in general health and other demographic characteristics, we observed a significant improvement in general health among PLH in the intervention condition over 12 months, compared to a decline in general health among PLH in the standard care condition.
Similar to general health, we observed a significant improvement in mental health among PLH in the intervention condition over 12 months, compared to a relative decline in mental health among PLH in the standard care condition, controlling for the baseline demographic characteristics and other predictors. We also found a marginal association between mental health and social support, and we found a significant association between mental health and family functioning.
For physical health, we found a significant inverse association between physical health and depression, as well as internalized shame. Adjusting for demographics and other predictors in the model, we found an increase in physical health among PLH in the intervention condition as well as PLH in the standard care condition. The difference in physical health between the two conditions over 12 months was not significant.
Our study underscores the importance of expanding services for PLH beyond their physical and medical needs. In addition to the medical challenges associated with living with HIV, PLH in Thailand face multiple mental, social, and behavioral challenges. In addition to negative factors such as depression that impact PLH’s quality of life, there are protective factors associated with improving PLH’s quality of life. For instance, as we identified the negative effects of PLH’s level of depression and perceived internalized shame on their perceived general health and mental health, we also observed that family functioning was positively associated with their perceived general health. These negative and positive factors are interconnected and call for integrated interventions to address the complexity of these challenges and improve PLH’s ability to cope with the illness.
Our study has provided evidence that PLH’s quality of life can be improved by a behavioral intervention. Compared to the standard care condition over 12 months, we found the intervention significantly improved the quality of life for PLH, both in their perceived general health and mental health. PLH in the intervention condition reported a significant increase in their general health and mental status over 12 months.
Physical health and mental health were central issues addressed in the intervention. With two out of four modules on health and mental health, we addressed challenges that PLH and their families face in Thailand. Our study further suggests that programs must be culturally adapted to ensure long-term effectiveness. For instance, to target mental health in the intervention, we learned that feelings of “guilt,” associated with the notion of “self-acceptance” and “karma,” are dominant themes in coping with HIV status in Thailand. This concept is highly relevant and identifiable in Thai Buddhist philosophy35 and was fully integrated into the intervention. Our findings again demonstrated the importance of adaptations to local culture as a better choice than “one size fits all” packaged interventions.36 Furthermore, by incorporating the intervention sessions in the routine healthcare system of district hospitals, we were able to involve service providers at the local level and implement the intervention activities at the routine care setting to maximize the possibility of sustainability. Thus, the mental health of PLH and other vulnerable populations can be achieved without the need for substantial additional resources.
Of the three quality of life outcomes examined, we found no significant intervention effect on PLH’s physical health. This finding was anticipated, as all PLH who participated in our trial were recruited from the district hospitals where they had continuous access to care, including access to ART. What was supplemented from our intervention session focused more on addressing the mental health and family relationship challenges that PLH face while coping with HIV. Therefore, while the improvement in their perceived mental health and general health may eventually translate to better perceived physical health, we may not have been able to observe this relationship within the confines of the 12 month follow-up period.
This study found significant relationships between family functioning and PLH’s perceived general and mental health for this population. Thailand is a strongly family-oriented society and families in Thailand are tightly knit, where good family functioning becomes an even more critical factor in an individual member’s well-being. Families living with HIV face many challenges that can compromise family functioning, such as health-seeking demands, treatment adherence, stress, financial difficulties, and stigma, both within and outside the family. During difficult times, it becomes particularly important for families to stay close and to help and support each other. If the family as a unit is able to successfully overcome these challenges, the quality of life for PLH and family members can be maintained. To examine the impact of the intervention on the family members of PLH, we are in the process of finalizing the data on the intervention provided to family members who were aware of the PLH’s serostatus.
In this study, we continued to see significant impacts of depressive symptoms and internalized shame on PLH quality of life, including the measure of physical health. Previous studies have demonstrated that mental health issues are closely associated with the experience of living with HIV/AIDS and with the course and management of the disease. For instance, depressive symptoms were associated with disease progression, and were a significant barrier to adherence to ART.37–40 Although we could not show intervention efficacy on physical health in this study, the relationships between mental health and general and physical health are evident. Our results imply that providing mental health intervention could lead to improved medical and treatment outcomes for PLH.
As with all studies, some inherent limitations should be noted. Although the randomization resulted in a balanced group, our study found that at baseline, PLH in the standard care condition reported slightly higher levels of perceived general health, compared to those in the intervention condition. One of the plausible explanations could be that our randomization was based on geographic location (pre-determined sub-districts) to avoid potential contaminations; this could have led to sample unbalance due to chance alone. We adjusted for this baseline difference in our repeated measure analysis, and we found that the level of perceived general health increased significantly over 12 months in the intervention condition, compared to a decline in general health in the standard care condition, after adjusting for the baseline differences. Our scales, although validated in pilot studies prior to this main trial, are prone to potential biases associated with self-report data. Another limitation pertains to how we measured depression. When we examined the intervention effect on depressive symptomatology over 12 months, we found that depressive symptoms reported by the PLH in the intervention group declined more than those in the control group. However, this difference over 12 months was not statistically significant. This could be due to the fact that we assessed depressive symptomatology rather than clinical diagnosis. Therefore, our study findings may not be generalizable to PLH with clinical depression.
Despite these limitations, the results of this study have important implications for future intervention and treatment programs for PLH. This study underscores the importance of applying the participatory approach to the development and implementation of intervention programs. This process can be applied to future interventions to address specific stressors by tailoring the intervention to a particular target group. Given the need to expand mental health interventions within HIV efforts,41 it is encouraging to see that PLH quality of life can be improved by a behavioral intervention. Program developers, clinicians, policymakers should pay close attention to PLH’s mental health challenges, coping skills, and family and social support, while simultaneously being aware of HIV-related stigma and discrimination in their community. Both social and psychological components should be integrated and incorporated into the programs. Advances in the understanding of family functioning and PLH quality of life suggest that program developers and researchers should address the connection between individual and family well-being. An intervention that helps PLH can strengthen the family as a unit, and strengthening family resiliency can also have positive impact on PLH.
This article was completed with the support of the National Institute of Nursing Research (grant NINR R01-NR009922). We thank all individuals who participated in the study, as well as the research coordinators, hospital directors, provincial health officers, and interviewers and facilitators in Chiang Rai province (Mae Chan and Chiang Saen district hospitals) and Nakhon Ratchasima province (Pak Chong and Khonburi district hospitals).
ContributorsLi Li contributed to the conception and design of the study and led the study implementation and the writing of the article. Sung-Jae Lee contributed to the summarization and interpretation of study results and data analysis. Mary Jane Rotheram contributed to the conception and design of the study and the interpretation of the study results. Chuleeporn Jiraphongsa, Siwaporn Khumtong, Sopon Iamsirithaworn, and Panithee Thammawijaya contributed to the data collection activities in Thailand, and contributed to the interpretation of the study results.
Human Participant Protection
This study was approved by the Institutional Review Boards of the University of California, Los Angeles, and the Thailand Ministry of Public Health Ethical Review Committee for Research in Human Subjects.