Introduction

In consistence with the widely used definition by UNAIDS, “children affected by HIV/AIDS” is defined for the purpose of this review as children under 18 years of age who are in one of the two categories: children who have lost one or both of their parents to HIV-related illness (AIDS orphans), children living with one or both HIV infected parents (vulnerable children). By the end of 2010, roughly 17.1 million (range from 15.4 to 19.1 million) children under the age of 18 have lost one or both parents to AIDS, and millions more are facing the potential of losing their parents to HIV/AIDS [1]. In the past decade, plights of children affected by HIV/AIDS increasingly received attention from mass media, scholars, government, non-governmental organizations and service providers [2]. Some of the challenges experienced by children affected by HIV/AIDS have been progressively documented. The potential stressors associated with parental HIV/AIDS include economic deprivation, disrupted schooling, multiple losses, uncertainty of clinical course of parental HIV/AIDS, inadequate care, stigma, and social isolation [3].

The exposure to a number of stressors associated with parental HIV/AIDS is likely to threaten children’s psychological well-being [3]. Psychological well-being is “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community” (p. 2) [4]. Specifically, with regard to the children affected by HIV/AIDS, psychological well-being refers to the procession of emotional, behavioral and social competence appropriate to their developmental stages and the resilience in the adversity of parental illness and death. Psychological well-being is one of the important elements of children’s health and development. It’s surely important for policy makers and service providers to understand how and to what degree parental HIV/AIDS affects the psychological well-being of children. Despite the potential importance of this issue, the impact of parental HIV/AIDS on the psychological well-being of children was overlooked by researchers during the early stages of the global HIV epidemic [5]. As asserted by Siegel and Gorey [6], there were no published empirical studies that investigated the psychological outcomes and grief reactions of children orphaned by AIDS before 1994.

Rigorous and systematic empirical studies concerning psychological well-being of children affected by HIV/AIDS were emerging in the past decade. Two earlier literature reviews have provided some general knowledge about this research topic. Wild [3], in 2001, found 6 published and 2 unpublished empirical studies which examined the psychosocial well-being of children affected by HIV/AIDS. Seven of them were conducted in the US and one study was in Africa. Four of the reviewed studies included a comparison group. The four studies showed inconsistent findings in terms of the impact of parental HIV/AIDS on children’s psychological well-being. Two studies reported higher level of depression, more externalizing problems, lower social competence and lower sense of control among children affected by HIV/AIDS in comparison with the children from HIV-free families; whereas the other two studies did not find such differences. Wild concluded that, based on the few studies that included a comparison group, data were insufficient regarding whether losing a parent to AIDS placed children at an increased risk for psychological distress. Wild also suggested future researchers to identify the personal, familial and community factors that might account for or influence the relationship between parental HIV/AIDS and children’s psychological well-being, rather than to simply establish the relationship.

Cluver and Gardner [7], in 2007, reviewed 24 published and unpublished empirical studies that examined mental health of children orphaned by AIDS. Sixteen of their reviewed studies included a comparison group. Three of the studies with a comparison group were conducted in the US and the other studies were in Africa. Their review suggested that children orphaned by AIDS might experience higher levels of psychological difficulties. Also, they found that studies revealed more internalizing problems than externalizing problems among children orphaned by AIDS. Based on this finding, they speculated that orphans, particularly those in Africa, were likely to experience more emotional problems such as depression and anxiety than conduct problems or other problem behaviors. They called for more rigorous studies with standardized instruments, appropriate comparison groups, and large sample sizes. They also indicated the increasing need of research in regions of emerging HIV epidemics such as China, India, and Eastern Europe.

These two reviews were informative in understanding the earlier literature on the psychological well-being of children affected by HIV/AIDS. However, there have been a growing number of studies in the past 5 years and there is a need to update our knowledge. Therefore, we conducted a systematic review to expand the two previous reviews by examining the existing global literature on psychological well-being of children affected by HIV/AIDS. The objective of this review is to synthesize the major findings of the impact of parental HIV/AIDS on children’s psychological well-being in terms of the following nine specific effects: (a) the effect of HIV-related parental illness and death on children’s well-being based on the comparison between children affected by parental HIV/AIDS (i.e., AIDS orphans and vulnerable children) and children from HIV-free families; (b) the effect of HIV-related parental death versus illness based on the comparison between AIDS orphans and vulnerable children; (c) the effect of HIV/AIDS as the cause of orphanhood based on the comparison between children orphaned by AIDS and children orphaned by non-AIDS causes; (d) the effect of double versus single parental loss; (e) the effect of paternal versus maternal loss; (f) the effect of parental HIV/AIDS overtime; (g) the moderating effects of key demographic characteristics such as child age and gender; (h) the mediating or moderating effects of risk factors that might aggravate the negative impact of parental HIV/AIDS on children’s psychological well-being; and (i) the mediating or moderating effects of protective factors for children’s psychological well-being in the context of parental HIV/AIDS.

Methods

Inclusion Criteria

Studies were included in the current review if they met all of the following criteria: (1) peer reviewed articles published in English language journals prior to October 2011; (2) quantitative studies reporting psychological well-being of children affected by HIV/AIDS; (3) studies including at least one of the following comparison groups: children orphaned by non-AIDS causes, and/or children from HIV-free families. Studies that exclusively focused on HIV positive children were not included in the current review, as we think the scope and depth of the issues regarding psychological well-being among HIV positive children merit a separate literature review.

Data Source

Electronic searches of PubMed, Web of Science, PsycINFO, and Sociological Abstract were carried out in October 2011. Each database was searched using the Boolean logic search model (see Appendix). All identified records (n = 288) were initially screened to exclude citations that did not provide quantitative data for children affected by HIV/AIDS (n = 124), or that did not focus on psychological well-being of children (n = 71) (e.g., studies on children’s physical development, nutrition, school enrollment, and caregivers’ health), or that did not include a desired comparison group (n = 45). We also hand-searched the reference sections of the previous literature reviews and other relevant articles [3, 79] and retrieved three additional articles [1012]. The search resulted in 51 eligible articles reporting data from a total of 30 studies. For the articles based on the same data, we combined the major findings related to children’s psychological well-being to avoid duplication in reporting.

Data Abstraction

Data abstraction forms were developed to retrieve study characteristics and major findings of the reviewed studies. The study characteristics included indicators of psychological well-being, research location and time, sampling strategy, and sample description. The key findings were organized around the nine effects of parental HIV/AIDS on children’s psychological well-being that we planned to examine in this review.

Results

Study Characteristics

Indicators of Psychological Well-Being

The operationalized definitions of psychological well-being were different across most of the studies. Generally, the indicators of psychological well-being in various studies fell into one or more of the three interrelated domains: emotional adjustment, behavioral adjustment and social adjustment. Twenty nine studies measured the emotional adjustment (e.g., depression, anxiety, anger, traumatic stress, loneliness, hopelessness, psychological distress, internalizing problems, and suicidal ideation). Fifteen studies measured the behavioral adjustment (e.g., delinquency, conduct/behavioral/externalizing problems, risk behaviors, disruptive behaviors, high-risk sexual behaviors, and hyperactivities). Fifteen studies measured the social adjustment (e.g., self-esteem, self-efficacy, future expectation, future orientation, school adjustment, social competence, peer problems, and quality of life). Twenty three studies used standardized or established instruments to measure psychological well-being. We summarized such instruments in the reviewed studies in Table 1. Most of the studies reported their findings based on the scores of the assessment and only three studies [28, 34, 38] reported their findings in terms of clinical diagnoses.

Table 1 Standardized or established measurement tools for psychological indicators used in the reviewed studies

Study Site and Time

The review included 30 studies, encompassing participants recruited from 12 countries, mostly in Africa. Data were collected from South Africa (number of studies, k = 5), South Africa and Uganda (k = 1), Uganda (k = 3), Zimbabwe (k = 3), Ghana (k = 1), Guinea (k = 1), Namibia (k = 1), Benin (k = 1), Ethiopia (k = 1), Tanzania (k = 1), United States (k = 8), Italy (k = 1), and China (k = 3). The included studies were published between 1996 and 2011.

Study Design and Sampling

Among the reviewed studies, 25 studies were based on cross-sectional data (Table 2) and five studies (16.7 %) reported the longitudinal outcomes of children (Table 3). The majority of the studies recruited research participants through local communities, schools, NGOs, and public HIV clinics. Five studies used random sampling (including three with stratified random sampling) [1519]. The sample size ranged from 30 to 5,321. Seven studies had sample size over 1,000 [16, 17, 1923], while four studies had sample size below 100 [2427]. Except for one study only collecting data from caregivers [28], all the other studies collected data from children, among which seven studies recruited caregivers as an additional source of information [12, 24, 2933].

Table 2 Summary of findings of 25 cross-sectional studies
Table 3 Summary of findings of five longitudinal studies

Target Population

Most of the reviewed studies primarily targeted the AIDS orphans, in which four studies only included maternal orphans [19, 2729]. Seven studies included both AIDS orphans and vulnerable children as study populations [16, 17, 29, 31, 35, 42, 46]. Five studies only included the vulnerable children [12, 24, 30, 3234]. Most of the participating children were 6–18 years of age. Five studies included youth aged 18–19 [21, 36], 19–20 [37], 19–21 [38], and 19–29 [22] in their samples. Two studies specified their participants as “children” but did not report the age range [19, 29].

Effect of HIV-Related Parental Illness and Death

Most of the studies consistently showed that, in comparison with children from HIV-free families, children affected by HIV/AIDS had poorer emotional, behavioral and social adjustment. As shown in Table 4, 77 % of the studies that compared emotional adjustment of children affected by HIV/AIDS (either AIDS orphans or vulnerable children) with children from HIV-free families reported that children affected by HIV/AIDS scored higher in emotional/internalizing problems, such as depression, traumatic stress, somatization, anxiety, loneliness, suicidal ideation, and hopelessness [21, 22, 29, 36, 4042]. Sixty one percent of the studies that assessed behavioral adjustment reported that children affected by HIV/AIDS presented more behavioral/externalizing problems, such as delinquency, conduct problems, disruptive behaviors, early and high-risk sexual activities, and hyperactivities [13, 16, 18, 26, 43]. About 69 % of studies that measured social adjustment found that children affected by HIV/AIDS demonstrated poorer scores on peer problems, peer social skills, school interest, self-esteem, life quality, hope and control toward future, social competence and locus of control [13, 31, 37, 4245].

Table 4 Summary of the findings of group comparison among children affected by HIV/AIDS, children orphaned by non-AIDS causes, and children from HIV-free families

A few studies did not find such differences between the children affected by HIV/AIDS and children from HIV-free families. Cluver et al. [26] found that AIDS orphans did not show more conduct and emotional problems, more peer problems, more attention difficulties, or less prosocial behaviors than children from HIV-free families in their South Africa sample. As discussed by the authors, this result may be due to the high exposure to violence and hunger affecting not only AIDS orphans but also children from HIV-free families in their research site. Forehand et al. [27] conducted a study in New Orleans, US, and found that AIDS orphans were no different than children from HIV-free families on depression and externalizing problems. They suggested that the stable family transition after maternal death may buffer the traumatic effect of maternal death. In their sample, most orphans moved to a new household of a close relative and had no more than one transition in residence. Regarding the social adjustment, Atwine et al. [18] found that AIDS orphans in Uganda did not score lower than children from HIV-free families on self-concept. Furthermore, maternal orphans who lost their mother for more than 4 years reported less psychological distress than children from HIV-free families [15].

Effect of HIV-Related Parental Death Versus Illness

As shown in Table 4, except for two studies, all the studies that compared the emotional and behavioral adjustment between AIDS orphans and vulnerable children showed that the two groups of children did not differ from each other. A study [45] with a large sample size in a central province of China showed that AIDS orphans (N = 755) and vulnerable children (N = 466) demonstrated similarly poorer psychological adjustment in terms of loneliness, self-esteem, future expectation, and hopefulness, than children from HIV-free families in the same rural community. In the same study, vulnerable children even reported higher levels of loneliness and lower levels of self-esteem than AIDS orphans, suggesting that vulnerable children were at higher risk for psychological problems. Similarly, the studies in Africa, including Ghana [46], South Africa [29], Zimbabwe [16], found that AIDS orphans and vulnerable children manifested similarly high levels of emotional distress and conduct problems.

However, a study in New York City found that, around the time of parental death, AIDS orphans experienced higher levels of emotional distress and had more contact with the criminal justice system than vulnerable children [41]. Likewise, Doku’s studies in Ghana found that AIDS orphans presented the most peer problems in comparison with vulnerable children, non-AIDS orphans and children from HIV-free families. Most of the AIDS orphans reported that they had just one or no friends at all and expressed the feelings that their peers did not like them [46, 47].

Effect of AIDS Orphanhood Versus Non-AIDS Orphanhood

All the studies that compared AIDS orphans with non-AIDS orphans were conducted in Africa, where AIDS orphans accounted for 30 % of all orphans [48]. Most of the studies reported that the psychological well-being of AIDS orphans was significantly poorer than non-AIDS orphans. Of the six studies that compared the emotional adjustment between AIDS orphans and non-AIDS orphans, five studies reported that AIDS orphans demonstrated more emotional problems, such as depression, anxiety, traumatic stress, anger, and sleeping difficulties [18, 19, 21, 39, 49]. Of the two studies that compared behavioral adjustment between the two groups, one study found that AIDS orphans presented more behavioral problems, such as conduct problems, and delinquency [50]. However, one study in Ghana showed that AIDS orphans and non-AIDS orphans had similar degree of emotional problems and behavioral problems [46].

Only three studies compared social adjustment between AIDS orphans and non-AIDS orphans and the results consistently showed that AIDS orphans presented poorer social adjustment. Specifically, they had more peer problems and lower self-esteem than non-AIDS orphans according to two studies in Ghana, Uganda, and South Africa [46, 51]. A similar result is also reported by a study using a subsample (N = 1,053) of a national survey in Ethiopia [19].

Effect of Single Versus Double Loss Related to HIV/AIDS

Single orphans are children whose mother or father has died and double orphans are children who have lost both parents to HIV/AIDS [2]. Five reviewed studies compared the psychological well-being between double orphans and single orphans but showed inconsistent findings. Two studies in China showed that double orphans and single orphans had a similar level of psychological well-being. Fang et al. [45] found that double orphans and single orphans did not differ in depression, loneliness, self-esteem, and future orientation. He and Ji [44] found no significant differences among paternal, maternal and double orphans in depression, self-esteem, and perceived quality of life.

Three studies in Africa showed that double orphans were at higher risk than single orphans. The study by Onuoha et al. [51] in Uganda and South Africa showed that double orphans (with 83 % of their sample being AIDS orphans) scored significantly higher on anxiety and lower on self-esteem than single orphans. A study in Namibia showed that, compared with children from HIV-free families, double orphans were 3.2 times as likely to fall into the clinical level of depression, while single orphans were about 1.5 times as likely to fall into the clinical level of depression [38]. Another study in South Africa showed that losing both parents imposed greater challenges on children’s psychological adjustment than losing one parent [13].

Effect of Maternal Versus Paternal Loss Related to HIV/AIDS

Of the reviewed studies, four compared the psychological well-being among paternal orphans and maternal orphans and the findings were mixed. Two studies found a similar level of psychological well-being between maternal orphans and paternal orphans. In the study by Ruiz-Casares et al. [38] in Namibia, maternal orphans and paternal orphans reported similar levels of depression. Also, in another study with a relatively small sample size in Uganda, Atwine et al. [18] found that maternal orphans (N = 13) and paternal orphans (N = 65) did not differ in anxiety, depression, anger, self-concept, and disruptive behaviors.

However, two studies in Zimbabwe demonstrated the difference in psychological well-being between maternal orphans and paternal orphans. Nyamukapa et al. [15] conducted a study with a randomly selected sample and found an interaction between children’s gender and orphanhood types, namely paternal orphans, maternal orphans and double orphans. For girls, paternal orphans presented the most evident psychological distress, and for boys, paternal and double orphans demonstrated the worst psychological well-being. Another study reported that maternal orphans were at particular risk of early debut of sexual intercourse [16].

Longitudinal Impact of Parental HIV/AIDS

Five studies reported the longitudinal effect of parental HIV/AIDS on children’s psychological well-being (Table 3). Cluver et al. [21] found that, in South Africa, the negative emotional outcomes worsened over a 4-year period amongst AIDS orphans. There was a steep rise in psychological distress (i.e., depression, anxiety, and post-traumatic stress) with age among AIDS orphans. However, the other four studies in the US suggested a different pattern. Using the data over 4 time points relative to the time of parental death (more than one year prior to parental death, from one year before to the day before parental death, from the day of parental death up to one year after parental death, from more than one year after parental death), Rotheram-Borus et al. [41] illustrated a curved pattern of psychological adjustment of orphaned children. They found that most of the indicators of psychological distress (i.e., depression, somatization, and contact with the criminal justice system) showed a peak at least one year prior to parental death and a linear decline over the year following parental death. One year later, most of the indicators of psychological distress of AIDS orphans were comparable with that of vulnerable children. Only the rates of unprotected sexual behaviors increased sharply following parental death among AIDS orphans. Also, externalizing problems and anxiety did not shift as a function of parental death [41]. The findings that psychological distress emerged before maternal death and then declined following maternal death were echoed by a longitudinal study by Pelton et al. [28] in the US. They found that even though more AIDS orphans had clinical levels of internalizing and externalizing problems than vulnerable children and children from HIV-free families before maternal death, no differences existed at six months after maternal death. However, they found that AIDS orphans developed more internalizing problems than vulnerable children two years after maternal death.

Two other longitudinal studies were also conducted in the US and showed mixed findings. One study investigated a sample of 50 vulnerable children living with HIV positive mother and 124 comparison children from HIV-free families [33]. They found that vulnerable children had a higher level of depression according to child’s report but not mother’s report, but there were no group difference in externalizing and internalizing problems across their four annual assessments. However, the other study, with a sample of 20 maternal AIDS orphans and 40 comparison children, suggested no group differences in either depression or externalizing problems across their two assessments [27].

Moderating Effect of Children’s Gender and Age

Thirteen studies presented the results on gender’s effect in the relationship between parental HIV/AIDS and the psychological well-being of children. The findings were inconsistent. Some studies found that boys were more vulnerable to the negative effects of parental HIV-related death. Kaggwa and Hindin [22] found that loss of a parent to HIV was associated with heightened depression and hopelessness among boys but not girls in their Uganda sample. Similarly, He and Ji concluded that, in rural China, orphaned boys were more vulnerable than orphaned girls to depression and decreasing of subjective quality of life in various aspects, such as family life, peer interaction, school life, and living environment [44]. But, some other studies reported that girls were more affected than boys by the loss of parents to HIV and showed poorer emotional adjustment [19, 25] and social adjustment [19].

However, some studies did not find such a gender difference [15, 16, 18, 36, 40, 42]. For example, Li et al. [42] found that gender did not intervene the link between parental HIV/AIDS and children’s psychological well-being as reflected in either emotional adjustment (depression and anxiety), or behavioral adjustment (conduct problems), or social adjustment (peer social skills and self-esteem). Nyamukapa et al. [16], based on their national survey sample, concluded that the parental HIV/AIDS was negatively associated with children’s psychological well-being regardless of gender. Unfortunately, most reviewed studies did not report the gender effect in moderating the link between parental HIV/AIDS and children’s psychological well-being, even though they collected data from both boys and girls.

Ten studies also considered the role of children’s age in the impact of parental HIV/AIDS on children’s psychological well-being. Most of the studies (80 %) reported that age did not influence the impact of parental HIV/AIDS on children’s psychological adjustment [12, 16, 18, 32, 34, 42, 46, 51]. Only two studies reported that age moderated the relationship between parental HIV/AIDS and children’s psychological well-being, but the findings were inconsistent. One longitudinal study in South Africa [21] found an increase in the psychological distress with age among AIDS orphans. However, another cross-sectional study in Zimbabwe stated that among the double orphans, older children showed less psychological distress than the younger ones [36].

Mediating or Moderating Effects of Risk Factors

Fifteen studies investigated the risk factors that might explain or aggravate the poorer adjustment of children affected by HIV/AIDS. However, many studies did not directly examine the potential interactions between parental HIV/AIDS and various risk factors. The risk factors that were examined by the reviewed studies were summarized into the following three main clusters.

The first cluster of risk factors is HIV-related traumatic or stressful life events. This cluster of factors included: death of family members, death of friends/relatives, violence exposure, child abuse, sibling separation, changes of caregivers/residence, illness in household, parental distress, excessive housework, inadequate care, and lower parent/caregiver connectedness, and parental disclosure of HIV status [1315, 21, 22, 30, 34, 35, 42, 43, 54, 55]. It was found that children affected by HIV/AIDS reported a higher level of total occurrence, density, duration, initial impact and lasting impact of traumatic events compared to children from HIV-free families [42]. AIDS orphans reported more caregiver illness and excessive housework, which aggravated the strong association between parental HIV/AIDS and psychological distress [43]. Zhao et al. [55] found that children affected by HIV/AIDS did not report a significantly higher prevalence of childhood sexual abuse when compared with children from HIV-free families, but about 30 % of all the children in their study reported having experienced at least one form of sexual abuse, including physical contact abuse or nonphysical contact abuse. In addition, it was reported that adolescents who knew their mother’s HIV status were eight times more likely to score in the clinical range of depression than those who did not know [34].

The second cluster is HIV-related stigma including perceived public stigma against people living with HIV/AIDS, perceived public stigma against children affected by HIV/AIDS, personal stigma against children affected by HIV/AIDS, and enacted stigma [15, 23, 39, 5254, 62]. Cluver et al. [52] reported that stigma mediated the negative association between AIDS-orphanhood and psychological well-being. Nyamukapa et al. [15] also reported that maternal AIDS orphans were five times more likely to experience stigma than children from HIV-free families. However, some other studies found that stigma was a pervasive factor that negatively affected all the children living in the HIV concentrated communities. For example, Lin et al. [53] differentiated two types of stigma, perceived public stigma and personal stigma against people living with HIV/AIDS, and reported that both of them were negatively associated with children’s psychological well-being. They also suggested that AIDS orphans, vulnerable children, and children from HIV-free families from the same community where HIV was prevalent experienced the similar level of stigma. Mueller et al. [13] reported that after controlling the orphan status and other confounding factors, HIV-related stigma strongly and negatively predicted children’s self-efficacy.

The third cluster is poverty and related socioeconomic disadvantages in resource poor countries. The factors examined in the reviewed studies included lack of food, lack of medical care, going to bed hungry, child headed household, child labor, inadequate care arrangement, and poor school attendance and enrollment [16, 17, 25, 37, 43, 49, 54]. Some studies reported that these risk factors were interacted with AIDS-orphanhood or HIV-related vulnerability. For example, one study in Guinea found that AIDS orphans were 3.04 times more likely to be engaged in child labor in framing fields and 2.73 times more likely to go to bed hungry on a daily base in comparison with other orphans [49]. Howard and colleagues found that, in Zimbabwe, AIDS orphans suffered most severe financial hardship compared with non-AIDS orphans and children from HIV-free families. In Benin, researchers also found that children affected by HIV/AIDS, compared with children from HIV-free families, were 1.94 times more likely to get fewer meals, 1.38 times more likely to treat themselves and 1.65 times more likely to go to work when they were sick [17]. Some other studies did not directly examine the interaction of parental HIV/AIDS and poverty-related factors but reported that poverty and related socio-economic hardship were additional risk besides being orphaned by AIDS [25, 37]. In Tanzania, more AIDS orphans than children from HIV-free families reported that they were hungry when they go to bed, which was one of the additional factors besides being an orphan that exert negative effects on children’s psychological well-being [25]. As suggested by the studies conducted by Nyamukapa et al. [15, 16] in Zimbabwe, being out of school contributed to the greater psychological distress of AIDS orphans, because these AIDS orphans would lose a safe place for learning skills, sharing grief and developing peer networks.

Mediating or Moderating Effects of Protective Factors

Ten studies explored the protective factors that might buffer against or mitigate the negative effect of parental HIV/AIDS on children’s psychological well-being. These factors can be summarized into individual factors, relational factors, and social factors. Individually, when children have adequate coping skills [14], they can cope well with the traumatic events along with parental illness and death and have a better psychological adjustment. Rotheram-Borus et al. provided a coping-skills intervention program for adolescent children of parents living with HIV/AIDS. The children in the intervention group reported significantly fewer problem behaviors and sexual partners, and less substance use two years after the intervention [56].

A trusting relationship with current caregivers might help children affected by HIV/AIDS to cope with life stressors. According to a study in rural China, children affected by HIV/AIDS reported a lower trusting relationship with current caregivers than children from HIV-free families [20]. The association between trusting relationship and psychological adjustment was also found to be independent of children’s family HIV/AIDS experiences (parental death, parental illness, or HIV-free). It was suggested that trusting relationship might be a global protective factor for children’s psychological adjustment. Furthermore, a positive relationship with caregivers benefited children affected by HIV/AIDS in the long run. Rotheram-Borus et al. [14] reported that positive parental bonds reduced children’s emotional distress 3 years after the delivery of intervention and increased children’s future expectation 6 years later.

Another robust stress buffer is the perceived or actual social support [13]. Onuoha and Munakata [39] found that AIDS orphans having a natural mentor (e.g., adults other than caregivers to whom a child can go for support) showed significantly better psychological well-being than those who did not have one. Besides the support from adults, access to support groups was found to be predictive of higher levels of self-concept, but not reduced levels of anxiety and depression among AIDS orphans [18]. In fact, almost all kinds of social support (informational, tangible, affectionate, and social interaction) from various resources (family, teachers, friends and significant others) may exert an positive effect on children’s psychological well-being [57]. Different sources and functions of social support were related to different psychological outcomes. Loneliness was negatively associated with tangible, informative, affectionate and positive social interaction from family, teachers and friends. Depression was negatively correlated with tangible support from family/relatives. Delinquency was negatively correlated with tangible support from family, teachers, friends and significant others [57].

Discussion

Our review synthesized the existing literature and found that some promising progress has been made in understanding the impact of parental HIV/AIDS on children’s psychological well-being. With the organization of emotional, behavioral and social adjustment of children, we tightened up the major findings to allow communication across studies in the field. We also examined nine specific effects of parental HIV/AIDS on children’s psychological well-being, which substantially extend the two prior literature reviews and provide potential directions for future research. The existing literature underscores the vulnerability of children affected by HIV/AIDS, including both AIDS orphans and vulnerable children, despite the variation in measurements of psychological well-being, comparison groups, and age range of children. However, there are a lot of specific issues that remain to be examined among this disadvantaged population. We attempt to identify the knowledge gaps in the field and discuss the future research directions accordingly.

Theoretical Framework

Future research and interventions need to be guided by sound theoretical framework and focus on theoretical integration and development. Except for two studies, most of the reviewed studies did not indicate a theoretical framework for their studies. Li et al. [58] proposed a developmental psychopathology model to understand the complexity and dynamics of child development in the face of adversities of parental HIV-related illness and death. Guiding by that framework, Li and colleagues [20, 42, 45, 63] evaluated children’s psychological outcomes in multiple domains and the risk and protective factors that may account for the outcomes in their studies. Nyamukapa et al. [16] developed their theoretical framework to address the causes and consequences of psychological distress among children affected by HIV/AIDS. Guiding by this comprehensive framework, their empirical studies illustrated that the effect of parental loss was moderated by the number, sequence, and timing of parental death, by the child’s characteristics, and by family and other social and contextual circumstances. Future research should employ psychological or psycho-developmental theories (e.g., stress and coping theory, resilience framework, developmental pathology) to guide the heath research of children affected by HIV/AIDS. Theoretical or conceptual framework may help us to systematically identify and address specific needs of children in the face of HIV-related parental illness and death.

Longitudinal Impact of Parental HIV/AIDS

There is also a need for longitudinal studies which will allow us to understand the long-term impact of parental HIV/AIDS and children’s needs in the course of the parental illness and parental death. HIV may start to impact a child in an early stage of parental illness and the impact continues through the course of the illness and after parental death [2]. When the parent experiences a period of prolonged, chorionic illness before death occurs, children might repeatedly be exposed to traumatic events, like observing parent’s illness-related distress, taking care of ill parents, doing excessive housework, and losing the opportunity of schooling [22, 25, 56, 59]. The reviewed five longitudinal studies portrayed curved patterns of psychological distress during various stages of parental loss (illness, death, after death) but their results are inconsistent in either the trajectory patterns of their curves (increment, decline, or U-shape) or the domains of children’s psychological well-being (emotional, behavioral or social adjustment). Thus, it is not clear regarding the most prominent difficulties for children in various stages of parental loss on the basis of the available data. Future studies could examine the mourning and coping process during various stages of parental loss, which might provide useful information for timing and effective interventions. Longitudinal studies will also afford us to differentiate the impact of parental HIV/AIDS from developmental patterns (e.g., intellectual or emotional maturity) or other confounding factors or contextual factors in these children’s life.

Gender Difference in Vulnerability

Our review demonstrates the lack of attention given to the role of gender in the existing literature. Most of the studies did not directly test the effect of gender in moderating the association between parental HIV/AIDS and psychological well-being. Of a few studies that analyzed data by gender, findings were equivocal. Some evidence supports the traditional focus on female disadvantages [9], whereas some evidence supports the male vulnerability. Developmental psychology theory has suggested that, girls are more likely to present internalizing problems and boys are more likely to present externalizing problems in facing stress [60]. This gender-linked vulnerability was partially related to the developmental characteristics of boys and girls. “‘Girls’ greater socialization for self-regulation and sensitivity to interpersonal concern increase their vulnerability to internalizing/emotional problems. On the other hand, dispositional differences in aggression, as well as the socialization practices that emphasize self-assertion and underemphasize empathy and self-regulation, may put boys at higher risk for externalizing problems” (p. 1269) [60]. However, the existing data are insufficient to draw a definitive conclusion on gender specific vulnerability of children affected by HIV/AIDS. Future researchers may pay more attentions toward this important child developmental issue.

Cultural Specific Risk and Protective Factors

There is a need to explore the mediating/moderating processes for any risk of problems and to identify the protective factors that might cultivate the psychological resilience of children in specific cultural contexts. The geographic distribution of the exiting studies did not appropriately reflect the actual global needs of children affected by HIV/AIDS since about two-thirds studies were conducted in sub-Saharan Africa. Although the majority of children affected by HIV/AIDS in the world are living in sub-Saharan, a large and increasing number of children affected by HIV/AIDS lived in low prevalence and concentrated HIV epidemic regions, such as Asia and Europe [61]. Their needs should not be overlooked. Political, economic and cultural factors in different regions may play important roles in the psychological well-being of children affected by HIV/AIDS in those regions [50]. The knowledge obtained from research in higher prevalence countries may not be all applicable to children in lower prevalence countries. One may note that poverty and stigma were mainly suggested as key risk factors by studies in Africa or other low-resource countries, such as China. These two risk factors may not be as prominent as in the US because relatively higher public concerns and resources have been addressed to children and adults affected by HIV/AIDS. The existing literature can also be greatly enriched by the studies addressing specific needs of children in countries with low prevalence and concentrated HIV epidemic.

Vulnerability Among Sub-Populations

There is a need for more rigorous and systematic quantitative research aimed at establishing the specific vulnerability in different sub-populations (i.e., double orphans vs. single orphans, maternal orphans vs. paternal orphans). The existing literature shows mixed results regarding the effects of orphanhood types on the psychological well-being of children. There are some possible explanations for the mixed results. First, the potential cultural factors may confound the effect of orphanhood types. For example, in Namibia, where a large proportion of children are raised by extended family, the importance of mother and father may be similar in such a pattern of child rearing [38]. But in other cultures with emphasis on mother’s role in children caregiving, like China and the US, maternal death might lead to more stress for children. Second, the transition and quality of care arrangement after parental death may explain the differences among single orphans and double orphans. As discussed by several authors [19, 27, 35], if a double orphan smoothly transitions to a close adult caregiver and was provided with more stable care, he/she may not show more psychological distress than a single orphan living with a parent who was struggling with HIV. Actually, the length of orphanhood, children’s age at the time of parental death, and the other socio-demographic-economic factors can all confound the effect of orphanhood types on children’s psychological well-being. Therefore, future studies need to test the interactive effects among orphanhood types and other confounding factors on children’s psychological well-being.

Limitations

This review is subject to some limitations. First, we did not include articles that were published in other languages in the review because of the accessibility concerns. Second, we only included the articles published in peer-reviewed journals, although some government reports, NGO documents, or unpublished manuscripts may provide valuable information on the psychological well-being of children affected by HIV/AIDS. Third, the grouping of risk factors and protective factors is helpful to understand the findings but may be categorically biased. Fourth, studies that do not include control groups but only follow an HIV infected sample of parents often tend to focus on the level of parental illness, which has been found to be significant factor in child outcomes. Evidence in such studies should not be ignored by researchers and practitioners. Fifth, the organization of the outcome measures into emotional, behavioral and social adjustments provides a vehicle for communication across studies, but it may subject to the possibility of conceptual overlapping. Finally, the current review did not focus on the children who are HIV positive, although some recruited children might be HIV positive. Also, there is growing evidence that an HIV infection has adverse effects independent of orphanhood on children’s mental health [7]. This most vulnerable group needs particular attention in future research.

Conclusion

In conclusion, parental HIV/AIDS exposes children to significant challenge for psychological adjustment. Future studies need to be guided by appropriate conceptual or theoretical framework to depict the psychological needs of these children. Methodologically, further studies need to employ sufficient sample size, use standardized instruments, and include appropriate comparison groups of children from HIV-free family or children orphaned by other causes. In addition, future researchers may make more efforts to identify the gender difference in HIV-related vulnerability, variation of the vulnerability among sub-populations, and the risk and protective factors within specific cultural contexts. It is urgent to implement evidence-based interventions to support children from individual, familial and community levels in a culturally and developmentally appropriate manner. Ideally, professionals from different disciplines, such as medical providers, social workers, psychiatrists, psychologists, and other related professionals should work collaboratively to provide comprehensive support to children affected by HIV/AIDS worldwide.