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AIDS Care. Author manuscript; available in PMC Oct 1, 2011.
Published in final edited form as:
PMCID: PMC3179792

Parents and Family Members in the Era of ART: Evidence from Cambodia and Thailand


Ensuring treatment adherence is critical for the success of ART programs in developing countries. Enlisting NGOs or PLHA group members as treatment supporters is one common strategy. Less attention is given to family members and especially older-age parents. Yet ART patients often live with other family members who are highly motivated to ensure treatment success. This study examines the role of family members and especially parents in assisting adherence in Cambodia and Thailand among adult ART patients. Most have a living parent and many live with or near a parent. Family members including parents commonly remind patients to take medications, particularly if coresident in the same household. Parents also remind patients to get resupplies and accompany them to appointments. Some contrasts between Cambodia and Thailand emerged. Fewer Cambodian than Thai patients had a living parent. However, among those who did, equal shares lived with parents. Cambodian parents more commonly reminded patients to take medications and get resupplies and accompanied them when doing so. In both countries correct knowledge of ART among parents was associated with the amount of advice from program personnel. The results underscore both the need to more explicitly incorporate close family members, including parents, into efforts to promote adherence and need for PLHA peers and home based care teams to provide them with adequate information, training and resources to increase their effectiveness.

Until recently, the onset of AIDS in most low- and middle-income countries led to rapid declines in health and certain death. Parents of infected adults often provided personal care, emotional support and material assistance to those infected and raised orphaned grandchildren (Boon et al. 2010; Chazan 2008; Knodel and VanLandingham 2002; Knodel, Watkins and VanLandingham 2003; Reddy et al. 2009; Ssengonzi 2009; Williams, Knodel & Lam 2010). Yet parents who are often at advanced ages have been virtually invisible in the discourse of the international and national agencies charged with dealing with the epidemic except in connection with raising AIDS orphans.

With widening availability of antiretroviral therapy (ART), persons living with HIV/AIDS (PLHA) can regain reasonable health or even avoid serious illness if treatment starts early enough. As a result, many adverse effects of the epidemic on family members prior to the expansion of ART have likely declined or are at least significantly delayed. At the same time, effective use of ART requires sustained adherence to drug regimens, attention to diet and exercise, and coping with side effects. This presents a major challenge to health systems, especially in resource limited countries (UNESCAP 2009a; WHO 2009).

Augmenting adherence through treatment supporters from PLHA support groups is the most common strategy to deal with this challenge (Burrage & Demi 2003; Hope & Israel 2007; Marino et al. 2007; United Nations 2008). Less recognition is given in the relevant literature to the role that family members can play and older generation members are virtually never mentioned. Yet widespread access to ART creates new opportunities for family members, including parents of adults or grandparents of young orphaned children under treatment, to provide such assistance. Indeed, sustained adherence assistance on a prolonged and frequent basis is far more practical if a treatment supporter lives with or nearby the person on ART and is strongly motivated to help. In these respects, close family members, including parents, are particularly appropriate.

The present study assesses the role of parents and other family members in assisting treatment adherence among adult ART recipients in Cambodia and Thailand. The findings and recommendations are likely relevant for many other settings where family members, including those of advanced age, live with or near ART patients and are routinely involved in their daily lives.


Cambodia and Thailand provide interesting settings to compare the contribution of family members. Both share value systems grounded in Theravada Buddhism but differ starkly in economic and social development and in some aspects of their HIV/AIDS programs. Within Southeast Asia, Cambodia scores lowest on the UN Human Development index while Thailand scores among the highest (UNESCAP 2009b). Per capita Gross National Income measured in purchasing power parity in Thailand is four times that of Cambodia (UNFPA 2009). Moreover Cambodia suffered severe political unrest and lost a substantial portion of its population during civil war and Khmer Rouge rule in the 1970s while Thailand has been spared major civil conflict during the last half century.

Earlier research in both countries documented that prior to widespread access to ART, most adults who died of HIV/AIDS had lived with or nearby a parent at the terminal stage and received parental care and financial support (Knodel et al. 2001 and 2007). Although HIV prevalence in both Thailand and Cambodia has been among the highest in Southeast Asia, incidence in both has declined sharply. Adult prevalence fell from about 2% in the 1990s to 1.3% in Thailand and 0.5% in Cambodia by 2009 (UNAIDS 2010; USAID 2008). Both countries provide free ART at government expense and have been highly successful in moving towards universal access. By 2007 around 80% of adults and children with advanced HIV infection in both countries were receiving treatment (UNESCAP 2009a).

Efforts to augment treatment adherence in both countries are being made within a ‘continuum of care’ framework. In Thailand efforts focus on assistance through PLHA peer support groups typically affiliated with hospitals (Lyttleton, Beesey & Sitthikriengkrai 2007; UNGASS 2008; Revenga et al. 2006). Designated group members in collaboration with hospital staff do counseling and make home visits to monitor progress of new cases and suggest how to adhere to ART protocols and manage side effects (Senaratana, Nantachaipan and Potjanamart 2009). Responsibilities include providing relevant information to family members (Kumphitak et al, 2004). As of January 2010, continuum of care centers operated in 367 of the 1014 ART facilities (UNGASS 2010). For the first time the 10th National AIDS Plan (2007–2011) includes older people affected by HIV/AIDS as a specific target group for interventions (Orbach 2007). The Thai HIV/AIDS program is financed largely through domestic funds and is incorporated into and largely operated through the government health system with some help from PLHA groups (WHO 2009).

In Cambodia, where the public health system is considerably weaker, HIV/AIDS is addressed through an aggressive vertical program within the Ministry of Health. The continuum of care package includes PLHA peer support groups although they play a less dominant role in home visits than in Thailand (USAID 2008). Instead the government program shares responsibility for home-based care with a broad coalition of NGOs (Buehler et al. 2006; Charanay 2009; WHO 2006). Coverage appears to be more extensive in Cambodia than Thailand. Almost three-fourths of health centers are associated with home based care teams and about half of ART recipients receive home based care support (NCHADS 2009). However, the National AIDS Plan makes no mention of the role or needs of older persons except in references to grandparents caring for affected children (National AIDS Authority 2007). Also, program financing including the NGO component depends heavily on external funds (UNESCAP 2009a).


Data for the present study were collected under the auspices of the Chulalongkorn University Faculty of Nursing (Thailand) and the Analyzing Development Issues project of the Cooperation Committee for Cambodia using two approaches. The first involved surveys using virtually identical brief questionnaires of 340 adult ART recipients in Cambodia during May 2008 and 912 recipients in Thailand between September 2008 and February 2009. Recipients were asked about their living arrangements, if their parents were living, and treatment adherence assistance from family members with greater detail asked about the role of parents than of others. Most results presented below are based on this source.

In Thailand, nurses asked patients coming for resupply to complete the questionnaires on their own. Sample sites consisted of two Bangkok hospitals and 16 hospitals in five provinces including at least one province in each of the four major regions. In each province, sites included the provincial hospital and two district hospitals (three in one province). Sample sizes were approximately equal for each province and for Bangkok. Nurses at each site unanimously reported that there were virtually no refusals likely reflecting their good relations with patients, the brevity and anonymous nature of the questionnaire, and the lack of sensitive questions. Although purposive, the sample’s composition with respect to gender and types of government insurance schemes used closely resembles the national pool of adult ART recipients (Knodel et al. 2010).

In Cambodia, the ART recipient survey took place in six communes (including both rural and urban ones) of the north-western province of Banteay Meanchey. Questionnaires were administered by interview mainly by home based care team members who worked under NGOs in the communes. Given the sample’s limited coverage, the Cambodian ART recipient data are unlikely to be as representative of national caseload as the Thai data. Comparisons between Thai and Cambodian results and measures of statistical significance of differences are only suggestive given differences in the sampling and the purposive nature of site selection for both surveys.

The second data collection approach involved detailed face-to-face interviews with convenience samples of 108 older persons in each country who were involved with an ART recipient. The questionnaires used differed but covered similar issues. In Thailand, interviews took place between September 2008 and February 2009 and involved parents of adult ART recipients including 82 in which the parents and recipient coresided. In Cambodia, interviews took place in May 2008 and involved 80 with parents of an ART recipient, 60 of whom coresided with the recipient, and 28 persons age 50 or older other than a parent who coresided with someone on ART (e.g. child-in-law or grandchild). In Thailand, respondents were indentified through PLHA support groups in all four regions of the country and interviewed by faculty or recent graduates of the Chulalongkorn University Faculty of Nursing. In Cambodia, respondents were identified through home based care teams and interviewed by participants in a research training program for NGO staff. In the present study, data from the older person interviews is limited to examining the association between ART-related knowledge and contact with persons associated with the ART program.


Sample characteristics

The ART recipient surveys indicate that over 80% in Thaiand and just over 60% in Cambodia reported having a living parent (Table 1). The lower percentage in Cambodia likely reflects higher mortality from poorer health conditions and the legacy of the Khmer Rouge period when many of today’s adults lost parents, particularly fathers. Still, it is important to note that over half of adult Cambodian ART recipients and almost three fourths of Thai recipients have a living mother given that mothers have played an active role in HIV caregiving in both countries (Knodel et al. 2001 and 2007). Most parents of adult ART recipients are at advanced ages with few under 50. Still the Thai parents are notably older than their Cambodian counterparts likely reflecting the later ages of childbearing in Thailand than Cambodia over decades past. The age distributions of the recipients themselves differ less although Cambodians are somewhat younger than the Thais. Differences in the gender distributions are more striking. Women represent almost 60% of the Cambodian sample compared to about half of the Thai sample. According to national program statistics, females represented 49% of adult ART recipients in Thailand in 2007 and 52% in Cambodia in 2009 (Knodel et al. 2010; NCHADS 2010).

Table 1
Characteristics of antiretroviral therapy patients and age distribution of their parents

Given that assistance with treatment adherence on a routine basis is far more practical for persons who live with or very nearby the person on ART, living arrangements have considerable bearing on who is potentially available for assistance. As Table 1 indicates, few recipients live alone or with a non-relative although solitary living is modestly more common among the Thai than the Cambodian sample. Almost two thirds of Cambodian compared to under one third of Thai recipients reported living with a child, reflecting the higher fertility in Cambodia than in Thailand over recent decades. Cambodian recipients were more likely than Thais to live with a spouse, reflecting the younger age of marriage in Cambodia. In contrast, a third of the total Thai sample compared to only a fourth of the Cambodian sample lived with a parent. The difference is entirely attributable to the higher proportion of Thai than Cambodian recipients who have a surviving parent. Thus among recipients with at least one living parent, two fifths of both samples report coresidence with a parent. Moreover, 70% of Cambodian and 63% of Thai ART recipients who have a living parent report living at least in the same locality as their parents.

Treatment assistance

ART recipients were asked to indicate if different types of persons helped remind them to take their medications. Among the total samples of recipients, the most common person to help remind is a spouse with half of the Thai and 57% of the Cambodian samples indicating this (Figure 1). Thai recipients report parents as second most common but for Cambodian recipients, parents trail behind children. The fact that, among all recipients, a parent is far more likely to remind than a child among Thais while the reverse is true for Cambodians is likely due to differences between the samples in the proportions who have a living parent and who have a child. When conditioned on coresiding with each type of person, large proportions of coresident family members are said to help remind the ART recipient to take medications regardless of relationship. This suggests substantial concern for recipients’ well-being among family members. Moreover, differences between Cambodia and Thailand when conditioned on coresidence are far more modest except for siblings.

Figure 1
Percentage who currently remind ART recipient to take medications by relationship to recipient

The ART recipient survey included a number of questions that specifically refer to parents. Most recipients with a living parent report that their parents know that they are on ART, especially among those who coreside (Table 2). Still, parental awareness is noticeably higher in the Cambodian than Thai sample even among coresident recipients (99% versus 86%). This likely reflects in part the fact that the Cambodian sample was recruited mainly through home based care team members and thus most respondents would receive home care visits virtually assuring that parents would learn that their child was on ART. In the Thai case, some coresident parents who were unaware their child was on ART might still know that the child was on medications but not know their nature.

Table 2
Awareness of treatment and treatment assistance by a parent to all ART recipients and to recipients who are coresident with a parent

Parents also commonly assist with treatment adherence. Less than two fifths of recipients with living parents in both samples report that a parent never reminded them to take their medications although 10% reported that parents used to but no longer do so, perhaps because the recipient no longer needs reminding. Among coresident cases, less than a fourth in both samples indicate parents never reminded them. Cambodian parents, however, are more likely to remind frequently than Thai parents. This may reflect that home based care teams were more common in the Cambodian than Thai sample sites. Based on the interviews with older persons, 75% of Cambodian respondents said that the ART recipient was visited by a home care team and half of these said visits were at least monthly. Among Thai parents of ART recipients, 64% said that the recipient was ever visited and only 15% of these reported regular visits.

Besides remembering to take medicines on time, adequate adherence involves regularly obtaining resupplies and having the medications ready to take. To determine parental assistance in these matters, ART recipients were asked if parents ever reminded them to go for resupply, had ever taken or accompanied them when going for resupply, and if parents had helped prepare the medications to take. Cambodian ART recipients with a living parent were noticeably more likely to report parental assistance in these matters than their Thai counterpoints. Still over half (54%) of Thai recipients with a living parent and over 70% of those coresident with a parent indicated they had received parental assistance in at least one of these three ways.

Table 2 also provides an overall summary score for parental treatment assistance. One point is given for parental help in each of the three tasks just discussed, two points if parents currently remind often or daily, and one point if parents currently remind sometimes or did so in past. The score can vary from 0 to 5 with higher scores signifying greater parental assistance. In both samples, living with a parent is clearly associated with higher scores. Also, scores are noticeably higher among the Cambodian than the Thai sample.

Knowledge of ART

An important prerequisite for parents and other family members to effectively assist ART treatment adherence is correct knowledge of the requirements. Both the Cambodian and Thai AIDS programs encompass several components through which family members can obtain such information. These include contact with health professionals at service sites and home visits by AIDS program personnel or, especially in Thailand, PLHA support group members. PLHA support groups meetings, which sometimes family members attend, can also provide useful information.

In the present study, interest focuses on the association of knowledge and the extent that older persons interviewed had contact with or received advice from HIV/AIDS care and treatment programs. Information on knowledge of ART and receipt of advice was collected in both countries in the interviews with the older persons who were involved with an ART recipient. Since the questionnaires for each country were developed independently, the specific questions asked differed. Nevertheless summary scores of knowledge and sources of advice can be computed for each and the association between knowledge and advice can then be compared.

Knowledge scores for older persons interviewed in Cambodia were calculated as the number of correct responses to eight questions concerning whether ART was available free, how often medications need to be taken, how often resupply is needed and awareness of five specific ART program requirements. For the Thai parents, knowledge scores were based on five questions asking how often ART medications need to be taken, if medications need to be taken at the same time every day, how often resupply is needed, where to go for resupply, and awareness of tests for CD4 counts. One point is given for each correct or plausible answer to the first four questions and for awareness of CD4 tests. One point was subtracted for each question a respondent could not answer.

For Cambodia, the extent of advice received equaled the number of six possible sources from which respondents received ART advice. Parents interviewed in Thailand were asked if they received general information on ART, if they were advised on caring for someone on ART, if they had received advice on HIV/AIDS care prior to when their child started ART, and if they had attended a PLHA support group meeting. The measure of the types of advice received equalled the sum of positive responses to these four items.

For both Cambodian and Thai samples, a strong association exists between advice and knowledge scores (Table 3). In Cambodia, education is also clearly associated with knowledge. Since education could also make persons more prone to seek advice, we control for educational attainment when examining the association between advice and knowledge. Statistically adjusting for education slightly weakens the association in the Cambodian sample and has little effect in the Thai sample. Thus receiving advice from program sources seems to considerably improve older person’s knowledge independent of education.

Table 3
ART knowledge score by literacy, education, whether parent was advised regarding ART or post-ART care, whether home visitor explained ART, and whether the parent, Thailand

In both the Cambodian and Thai samples of older persons, those with better ART knowledge were also more likely to report that they reminded their adult child or relative to take medications (results not in table). For example, among Cambodian older persons, 100% of those whose score was above the median said that they or their spouse reminded the ART recipient to take medications compared to only 47% of those with knowledge scores below the median. Among Thai parents, 76% whose knowledge score was above the median compared to 60% whose score was below indicated they had ever reminded their adult child to take medications. This association does not necessarily imply causality. Respondents who are more motivated and active in encouraging adherence may also be more motivated to learn about ART requirements. Thus rather than knowledge leading to a greater tendency to help remind taking medications, the causation could run in the reverse direction. Still, it is plausible that better informed respondents are more effective in providing treatment support than those who know less about ART and that causality runs in both directions.

Discussions and Conclusions

Enlisting peers from PLHA support groups as treatment partners, as in Thailand, is a common strategy to augment adherence in ART programs in developing countries. A somewhat different model is followed in Cambodia where NGOs, in coordination with the Government HIV/AIDS program, share responsibility for home based care and together with PLHA support groups promote adherence. Although cost-effective, such programs still entail administrative expenses and payments that can be a concern in resource-limited settings, especially as ART programs expand. Moreover, where funding is primarily dependent on external sources, as in Cambodia, sustaining these activities is vulnerable to changing priorities and financial resources of donors (Mills et al. 2010).

Family members are sometimes mentioned in the context of treatment support but receive far less attention than PLHA peers in the discourse of international agencies and in most national program plans. Moreover, when mentioned, older generation members such as parents are almost never specifically cited. Their neglect may reflect assumptions that older persons, who in poorer countries typically lack much formal education, are incapable of sufficiently understanding ART to provide useful assistance.

The present study examined evidence from ART recipients and older persons with an adult child or coresident relative on ART in Cambodia and Thailand. It has several weaknesses including the non-probability nature of the samples, the limited amount of information collected from the recipients, and the small samples of older persons interviewed. Nevertheless the results provide clear evidence that most adult ART patients have a living parent and many live with or in the same locality as a parent. The results also document that family members, including parents, commonly help ART patients to remember to take their medications, particularly when they live in the same household. Parents also assist in reminding their adult child to go for resupplies of medications and bringing them to appointments. An important issue not addressed but which would appropriate for future research is the degree to which actions by parents/family members actually affect adherence.

Some contrasts between Cambodia and Thailand emerged. Substantially fewer Cambodian than Thai ART recipients had a living parent. Although among recipients with a living parent, equal shares coresided with parents in both samples, more resided outside the parent’s local area among the Thai than Cambodian sample. Cambodian recipients were also more likely than Thai recipients to report that their parents were aware they were on ART, frequently reminded them to take medications, to get resupplies, and to have accompanied them when doing so. This contrast is interesting given the lower educational levels of older persons in Cambodia than Thailand.

Given the non-probability nature of the samples, these differences are only suggestive of general patterns within the two countries. Still, other evidence supports their plausibility. Nationally representative surveys document that adult Cambodians are less likely than Thais to have a living parent (Knodel 2009). Representative surveys also indicate that adults are more likely to live away from their parents in Thailand than Cambodia (Zimmer et al. 2008). Finally, home based care teams have more complete and active coverage in Cambodia than Thailand, a situation that could contribute to greater awareness among family members that the recipient is undergoing treatment and encourage them to assist with adherence despite lower education.

The relative lack of attention given to family members, including older-age parents, in augmenting adherence is unfortunate given that they often live with or near ART patients and have deep emotional reasons for wanting the patient to achieve and maintain restored health. Such family members are present on a day-to-day basis and often at the specific time that medications need to be taken and are thus ideally positioned to augment treatment adherence over long periods of time. Moreover, they neither need nor expect financial compensation for their assistance. The only costs would be associated with providing sufficient information to promote their effectiveness. These advantages hold not only in Cambodia and Thailand but in many other settings as well.

The interviews with older persons in both countries indicate that basic knowledge of treatment requirements is strongly associated with receiving relevant advice from program personnel. It is unrealistic to expect PLHA peers or NGO home based care teams to assist on the same frequent and continuous basis that family members could. However, they can provide information and training and supplemental support including monitoring of the family’s situation. They can also act as intermediaries between the family and the health system. Our results underscore the need to incorporate family members, including parents, more explicitly into programs intended to augment adherence and the important role that PLHA peers and home based care teams can play in facilitating their effectiveness.


This analysis was an activity of the Research Network on AIDS and Older Persons of the Michigan Center for the Demography of Aging funded by the National Institute on Aging, grant P30AG012846-16. We are grateful to Jiraporn Kespichayawattana, Chanpen Saengtienchai and Suvinee Wiwatwanich for their role in the Thai research.


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