Social and familial relationships emerge as key influences on the health and well-being of PLH. Previous research has demonstrated that families form the backbone of Thai social networks, even after marriage (Knodel et al. 2001
). The results of this study support the concept of the family’s centrality in Thai culture and the importance of family support to PLH. These findings and the strong cultural norms prevailing in Thailand towards families suggest that care be reorganized towards providing more family-based services. Filial obligations are universally expected, so that elderly parents and adult children live in close proximity: About half of adult children live in the same community as their parents and half of these co-reside in the same household (Knodel and Im-em 2004
Our measure of family functioning included multiple indices: an analysis of the consistency and tone of the family’s daily routines; and indices of cohesiveness, problem solving, and conflict within the family. In the United States, families that have an organized and structured family life report a better quality of life (Weisner 2008
; Weisner et al. 2002
; Weisner and Lowe 2004
). Indices of both physical and mental health benefit from consistent daily routines that are positive in tone, high cohesiveness, problem solving, and low-conflict family relationships. It is likely that strong, consistent routines also help families maintain order and balance in the face of devastating illness. Coping with chronic conditions, especially those that may end in death, often require substantial accommodation, especially during periods of acute illness (Crane and Marshall 2005
; Rolland 1987
). HIV requires such adaptation and is likely to tax the entire family’s capacity to cope with the illness.
Disclosure plays a role in health adherence, but the primary influence of disclosure appears to operate through its relationship on the family and social relationships of the PLH. Disclosure is particularly related to Family Functioning. Typically, only with disclosure can we mobilize the family and social relationships to provide support for the PLH. In contrast, in the United States and in some African countries, disclosure is independently associated with perceived quality of life and mental health (Murphy et al. 2008
). Disclosing to others has a benefit that is independent of the relationships it improves.
While family and social relationships predicted better health and mental health, more disclosure was associated only with better ARV adherence. It is likely that it is difficult to seek care at HIV-identified sites if one is hiding one’s serostatus. In particular, in rural sites most community members are aware of the behavioral patterns of almost all community members. It is difficult to control information about clinic attendance if one seeks care at HIV-identified sites. Furthermore, even though confidentiality is a key norm of all support groups, attending group services for PLH may result in inadvertent disclosure to neighbors and friends of HIV serostatus. Being comfortable about disclosing one’s serostatus is likely to be strongly related to attending health services and availing oneself of necessary treatment. Non-disclosure may also be a barrier to medication adherence.
The observed relations among gender, age, and education generally reflect the culture of Thai society. As in many other countries, women are generally less educated and report more depression than men. Better educated people reported better social support and family functioning. To be effective, treatment regimens need to be understandable to a relatively under-educated population, and interventions to improve family functioning also need to be tailored to the education level of the participants. In families in which the PLH is more educated, the quality of the family and social relationships is higher and the associated benefits for physical and mental health are greater, according to our findings. It is unclear, however, whether the higher family functioning helped the PLH to receive a better education or whether the smarter PLH, who receives more education, is better able to sustain positive family relationships. It is likely that both relationships are operating.
This study shares with others some of the general limitations related to data based on patients’ self-reports, witch may be affected by social desirability and recall bias. In addition, because we used the cross-sectional data for this study, our findings cannot be interpreted as causal relationships.
One major caveat around disclosure is the eligibility criterion for this study. There had to be at least one other family member who knew about the HIV status of the PLH in order to be eligible for recruitment. In Northern Thailand, almost all PLH had disclosed to at least one family member. Patient registry data from the study sites in the Northeast indicated that 30% of their PLH were ineligible for recruitment. We have documented this regional difference in HIV disclosure (Lee et al. in press
). However, we have no evidence that family relations vary between Northern Thailand and Northeast Thailand. In addition, the challenges families face around HIV disclosure are universal. Given our eligibility criteria, the challenges documented in our study around HIV disclosure may be underestimating the impact of the challenge around HIV disclosure. In fact, PLH not included in our study may indeed have more challenges around HIV disclosure. This may have resulted in a sample that may not be representative of all PLH living in these regions, particularly in terms of HIV disclosure.
In addition, our measure of ARV adherence was relatively weak as it is only one item and it is based on self-report. Because the participants were newly enrolled in the study, more objective measures of adherence such as pill counts and physiological information were not available to the researchers. Also, the disclosure variable referred to individuals outside the immediate family. This was due to the design of the study which required that someone in the family know about the serostatus of the PWH.
Some unavoidable degree of conceptual overlap may be possible among some of the variables in the model. For instance, the relatively high correlation between the Social Support and Family Function latent variables indicates that they may have some features in common. Nonetheless, they were not used to predict each other but rather were used simultaneously to predict the outcomes and had differing impacts on the outcome variables. In the same fashion, depression and perceived health may have some overlap in that depressed individuals may perceive that their health is worse or bad health may lead to depression. As these were both used as outcomes and not as predictors of one or the other, this helps mitigate the overlap problem to some extent.
Implications for Public Health and Prevention
Despite these limitations, our findings support the growing body of evidence suggesting that psychosocial factors including depression, family functioning, social support, and HIV disclosure play an important role in ARV adherence (Ammassari et al. 2004
; Bouhnik et al. 2005
; Hartzell et al. 2007
; Ncama et al. 2008
; Tucker et al. 2003
). Due to their physical debilitation and the psychological impact of their infection, PLH remain a highly vulnerable group to social isolation (Singh et al. 1999
), and social support may play a significant role in ARV adherence (Ncama et al. 2008
). In addition, our findings suggest that the various factor associated with ARV adherence are also interconnected. For example, PLH’s depression could be a direct result of adverse physical side effects due to ART, as well as estranged family relations, and/or lack of social support (Catz et al. 2000
). At the same time, reducing depressive symptoms may result in increased ARV adherence (Yun et al. 2005
Future programs and intervention that address the challenges that PLH and their families face are urgently needed. Longitudinal examination of the impact of the cumulative burden of HIV on psychological well-being, family relationships and quality of life of families living with HIV may contribute to a better understanding of service providers’ capacities to respond to the needs of families living with HIV in Thailand. The programs should address the mental health needs of PLH and their family members. Understanding the complex relationship between ARV adherence, HIV disclosure, social support, family functioning, mental health, and quality of life may help to identify effective approaches to intervention to promote the well-being of families living with HIV in Thailand. Building on the existing programs in Thailand, we are currently mounting a longitudinal trial and providing the family-based intervention for PLH and their caregivers in Northern and Northeastern Thailand, focusing on family well-being, in a non-stigmatizing setting.