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. Author manuscript; available in PMC: 2011 Oct 12.
Published in final edited form as: Future Virol. 2011 Jun;6(6):687–696. doi: 10.2217/fvl.11.45

Towards a family-centered approach to HIV treatment and care for HIV-exposed children, their mothers and their families in poorly resourced settings

Tamsen Jean Rochat 1,†, Ruth Bland 1,2, Hoosen Coovadia 3,4, Alan Stein 5, Marie-Louise Newell 1,6
PMCID: PMC3191857  EMSID: UKMS36224  PMID: 22003360

Abstract

This article provides a summary of emerging psychosocial evidence relevant to the success of comprehensive family-centered approaches to HIV prevention, treatment, care and support programs in poorly resourced settings. This report synthesizes current evidence on maternal, paternal and family experiences of HIV prevention, diagnosis, treatment, adherence and disclosure, with special focus on HIV-infected mothers and HIV-exposed children. Taking a developmental approach, we explore the current challenges and opportunities towards a family-centered approach within the continuum of HIV treatment and care, beginning in pregnancy and following the course of childhood. The discussion is limited to early and middle childhood and excludes discussion of special issues emergent in adolescence, which would warrant discussion outside the scope of this article. Attention is drawn to the complexity of problems arising within the family context and the need for improvements in the integration of aspects of treatment, care and support. While this article focuses on examples from sub-Saharan Africa, the lessons learnt and future challenges outlined are applicable to most low- and middle-income countries, and to poorly resourced contexts in higher-income countries.

Keywords: adherence, care, child development, disclosure, family-centered, HIV-exposed children, HIV-infected mothers, prevention, treatment

HIV has a significant and growing impact on families across the globe, especially in poorly resourced contexts, where already-struggling public health systems face an increasing burden of care. Progress in HIV treatment, care and support has been made over the last 5 years, particularly in heavily affected areas such as sub-Saharan Africa. Successful pediatric and family treatment cohorts have emerged, either as a result of increased political will, as in South Africa, or with the implementation of donor-funded public–private partnerships, as in Botswana. Emerging programs have provided opportunities to tackle the barriers to successful treatment [1], and there is increasing support for family-centered approaches to treatment and care. Models that can be delivered at scale within existing health systems in an integrated manner are still some way off. Current scaling-up of HIV treatment and care provides exciting possibilities for the development of strategic and comprehensive family-centered approaches to HIV treatment, care and support in poorly resourced settings [2].

Opportunities are now emerging to optimize prevention and the continuum of care in order to improve not only the physical, but also the psycho logical, social and developmental outcomes of young children. This article will examine those opportunities along the continuum of care, firstly among at-risk women before and during pregnancy, following delivery and through the early postnatal period. Secondly, among young HIV-exposed children, we explore opportunities for early initiation of HIV treatment and for the development of comprehensive care strategies for HIV-infected mothers and HIV-exposed but -uninfected children, including the promotion of early child development and stimulation. Lastly, we examine opportunities to support maternal adherence and disclosure within the family context throughout childhood.

Challenges & opportunities in family planning, antenatal care & prevention

The most significant way to impact on the HIV epidemic in children is to prevent new infections in women of childbearing age and unintended pregnancies in HIV-infected women [3]. Despite this, available evidence suggests that family planning efforts within maternal care services are either nonexistent or failing, with as many as 80% of women testing for HIV during pregnancy reporting an unplanned pregnancy [4,5]. Family planning and contraceptive services to prevent unintended pregnancies and reinfection of HIV-positive women are not well integrated with HIV treatment and care or prevention of mother-to-child transmission (PMTCT) programs. Furthermore, while many HIV-positive women, men and couples want to have children [6–8], few services provide counsel ing or support regarding the options, risks and benefits [9,10]. Family-centered approaches need to consider these childbearing aspirations. The success of family planning requires effective targeting of the sexually active individual, including male partners and sexually active adolescents [11]. Given the high HIV risk to women aged 15–24 years, efforts to improve prevention of unwanted pregnancies and family planning could benefit from models that extend beyond the primary healthcare environment and harness the potential of both school- and community-level reproductive health awareness and prevention [12]. These may include early sexuality and gender equality educational interventions and adolescent-friendly services [13,14]. Furthermore, improved use of every client contact within HIV services should include incorporating family planning and dual contraception messages, particularly given the traditionally heavy reliance on injectable contraception in poorly resourced contexts [5,15]. Similarly, engaging male partners [16], reducing stigma and encouraging couples counseling [17–19], which are often neglected in poorly resourced settings because of logistical and practical barriers, are cornerstones of family-centered approaches. Similarly, HIV prevention tends to focus on premarital and extramarital sexual behavior, but in areas with high HIV prevalence, the protective needs of married and cohabiting couples are just as important [20]. Conceptual frameworks for integration have been developed [21], but health provider training, skills and attitudes remain a major barrier to the successful integration of family planning and HIV services in poorly resourced settings.

Following this, prevention efforts should focus on identifying and intervening with pregnant HIV-infected women to reduce the risks to both themselves and their unborn child [22]. Increasing the identification of HIV during pregnancy requires that all pregnant women test for HIV during pregnancy and that HIV-negative women retest in later pregnancy to detect acute primary HIV infection [7,23]. Increasing the involvement of the male partners in antenatal voluntary counseling, testing and attendance improves women’s adherence with PMTCT programs [13], but work is stil required to encourage not only male testing, but also to reduce stigma regarding services and increased disclosure practices within antenatal settings [24].

Once HIV-infected women have been identified during pregnancy, WHO PMTCT guidelines [101] and infant feeding guidelines [102] make specific and clear recommendations for the prevention of transmission from HIV-infected women to infants, based on robust evidence of the effectiveness of antiretroviral therapy (ART) administered antenatally, during delivery and in the early postnatal and breastfeeding period, to substantially reduce perinatal mother-to-child transmission [25]. In developing countries, these treatment practice models are often limited by critical shortages of healthcare professionals. Increasing evidence suggests that task shifting of primary care and prevention functions to community healthcare workers can improve the health outcomes of populations at a reasonable cost [26]. This includes service delivery of ART by community healthcare workers, which has shown similar clinical outcomes to regular professionally driven healthcare [27]. Harnessing this potential in models of delivery of both HIV prevention and treatment could improve ART rollout and increase access to treatment while expanding the capacity of healthcare institutions in resource-constrained environments [28].

Aside from the biomedical aspects of prevention and treatment in pregnancy, recent research from poorly resourced settings has also begun to articulate the psychological challenges involved in adjusting to maternal HIV infection, both during pregnancy and in the postnatal period [4,29]. Approaches to HIV testing and PMTCT have long raised concern in developed countries, in particular regarding ethical considerations and approaches to testing during pregnancy, informed consent and choice [30,31]. Qualitative research highlights the need to protect women’s rights to consent and ensure that HIV testing is sensitive to the far-reaching implications of learning that one is HIV positive during pregnancy [32]. In high-prevalence areas, concern is raised that women may be blamed or stigmatized as the ‘HIV infector’ if they are the first to test in a partnership. In poorly resourced settings, gender inequality and intimate partner violence are common during pregnancy [33,34], linked in turn to both depression and risk of HIV [35,36]. Stigma and discrimination often result in low levels of disclosure among pregnant women, lowered support and minimal partner engagement in PMTCT [2]. Women are expected to carry a significant and disproportionate load of the burden of responsibility towards PMTCT.

While recent studies in sub-Saharan Africa show that opt-out testing and group counseling approaches to HIV testing in poorly resourced settings are successful and acceptable to women [37], very little is known about how or whether psychological and social status interact with testing, decision making and experiences of PMTCT. In addition, qualitative work has highlighted the complex calculations women need to make between the risks and the benefits of health and social decision making to ensure prevention of transmission, particularly as they relate to disclosure of HIV status and compliance with preventative medication, which could be further compounded by psychological distress [38]. Preliminary evidence suggests that prevalence of depression among HIV testers is high (33–41%) antenatally [4] and postnatally [39], and may impact on a woman’s ability to engage with HIV testing and preventative programming, potentially altering women’s perceptions regarding the consequences (healthcare or otherwise) of testing for HIV during pregnancy [4]. Similarly, access to ART has been shown to improve quality of life and psychosocial health [40]. This evidence points to the importance of the inclusion of mental healthcare in family-centered approaches and to the role the social and relational context of pregnancy plays in preventative decision making [41].

Whether it is following the failure of PMTCT or during a period of illness and hospitalization in early infancy or childhood, learning one’s child’s or one’s own HIV diagnosis is never easy [29,42,43]. A metasynthesis of 45 qualitative studies [38] on HIV-positive motherhood found that negative taxonomies were common to the experience of HIV-positive motherhood. Furthermore, HIV during pregnancy often introduces emotional difficulties and stressors as mothers begin to see themselves in terms of a deviant motherhood status, which is accompanied by feelings of remorse and inadequacy, resulting in barriers to seeking antenatal care and support. This is often misplaced guilt or shame since it is more likely a failure in health service delivery or preventative services (or a complete lack thereof, as is common to many poorly resourced settings) that has resulted in the infection of the infant. As treatment becomes more available, there is an opportunity to reframe post-diagnosis defeatist experiences into positive and empowering experiences of successful motherhood where treatment access and compliance is a marker of achievement, with all its cumulative psychological spin-offs in terms of self-efficacy and empowerment. This is a challenge for services that may have previously pitted the child against the mother – often inadvertently – by the use of limited approaches, failures to engage and support mothers and with individualistic models that overlooked couples and families [44], although this is being addressed in some programs [2,45].

Challenges & opportunities in postnatal prevention, treatment & care

Beyond prevention, the early postnatal care and support of HIV-infected women, their HIV-exposed infants and their partners and families is frequently neglected in comprehensive service delivery and has been noted in Countdown 2008 to have been a common source of failure to meet the interim targets of the Millennium Development Goals [46]. Furthermore, effective integration of pediatric treatment with antenatal, postnatal and primary healthcare services enhances and enables early diagnosis of HIV in exposed children and timely access to HIV treatment. Family-centered approaches are being increasingly advocated for, along with growing advocacy for the important role played by male partners and fathers in the care of children [2,11,47].

However, despite the recent efforts to roll out ART to children in poorly resourced settings, particularly in sub-Saharan Africa, there is still a large unmet need for pediatric treatment [48]. Early ART has been shown to increase survival and decrease morbidity [49], but HIV-infected children in poorly resourced settings still begin ART relatively late, owing to their being diagnosed because of ill health or hospital admissions when they are already of school age [50,51]. Those starting treatment are often at an advanced stage of HIV disease, are frequently already malnourished and a significant proportion have pulmonary TB [50,52]. Several operational challenges are present in settings where resources are poor, transport services are limited, numbers of health personnel are inadequate to cope with demand, laboratory infrastructure is limited, links with education are fragmented and primary healthcare clinics are not structured to cope with chronic diseases on the scale caused by the HIV pandemic [53].

Several strategies exist for improving early infant diagnosis (Box 1) that mainly depend on optimizing opportunities that already exist at the clinic level and using every child encounter with the health services to ensure the child’s HIV status is known.

Box 1. Strategies to improve early diagnosis of HIV-infected children.

  • ▪ Educate and provide counseling to all HIV-infected mothers and fathers on the importance of early testing for HIV of their infants, support laboratory systems to ensure results are processed in a timely manner and encourage caregivers to ask for test results, while encouraging staff to provide such results

  • ▪ Ensure that all HIV-exposed infants have a PCR test taken at approximately 6 weeks of age (where this test is available) and after cessation of breastfeeding, and that families know the reason for the test, receive adequate counseling and preparation and are given results

  • ▪ Check that caregivers of all HIV-exposed infants who have had a PCR test taken are given the results at subsequent clinic visits and that HIV-infected children are immediately referred for treatment

  • ▪ Immediately refer infants (<12 months of age) confirmed to be HIV infected for treatment preparation and initiation, including proper counseling of caregivers/guardians

  • ▪ Use every visit to a health facility as an opportunity to assess the HIV status of children, and ensure continuity of information in relation to child status across healthcare interactions and settings using ‘Road to Health’ or ‘Under-Five Clinic’ cards

  • ▪ Use clinic or community immunization and vitamin A campaigns to assess the HIV status of all children

  • ▪ Encourage provider-initiated counseling and testing of children admitted to hospital

  • ▪ Forge closer links between TB, malnutrition and HIV services, ensuring that all children with TB and/or malnutrition are tested for HIV

  • ▪ Forge closer links between adult services so that all children of HIV-infected parents are included in service provision, from the provision of HIV testing to treatment and care

The family-centered approaches to care noted in Box 1 also ensure that HIV-infected mothers and fathers are regularly assessed and receive treatment as required, thus keeping parents healthier for longer, with benefits for both their infected and uninfected children [54]. The introduction of ART provides an opportunity for working with the healthier parent or guardian who is more able to engage in supporting the child, and so is, in essence, providing the family support.

Aside from the life-saving benefits of pediatric ART, the introduction of ART has raised questions regarding the development of young children infected with HIV and receiving ART. A systematic review of the cognitive effects of HIV on child development has shown the urgent need for standardized measures and interventions to prevent or ameliorate the developmental effects of HIV on young children [55]. To date, relatively little research has been conducted in Africa and other poorly resourced settings, but what is clear is that HIV has the potential to affect various domains of cognitive development through a variety of mechanisms, and that the most severe forms of encephalopathy have been arrested by the early introduction of ART [56]. One of the most important questions is whether the introduction of ART actually reverses some of these neurological deficits. Some studies show that ART leads to increased performance in memory, attention, executive function, behavior and motor function [57–59], while other studies have shown minimal improvement or even some deterioration [60]. One of the key deficits for children who are both infected and potentially affected by HIV is that of attentional capacity. This is important because of the evidence that these capacities are likely to be affected by HIV [61], and more recent follow-up work has shown that children in a US cohort growing up with HIV are at particular risk of suffering from attention deficit–hyperactivity disorder [62]. Research in South Africa has shown similar findings related to attention deficit–hyperactivity disorder [63]. These challenges may necessitate that models of family-centered care include rehabilitative services (including occupational and speech therapy and physiotherapy) aimed at maximizing the developmental capacity among HIV-infected children on ART.

For the much larger group of HIV-exposed but -uninfected children, given that both biological and environmental factors play a key role in early child development (particularly attention and cognitive development), the increased and regular parental contact that results from engagement in HIV treatment provides an important opportunity to work with mothers and fathers to enhance their children’s attentional capacities and cognitive development. It is known that attentional capacity is critical to learning, memory and executive function in general. Furthermore, by extending this to fathers and other family members directly engaged in childcare, these strategies can ensure the best family environment for a young infant to thrive in. However, when a parent is stressed or even depressed, it is difficult to provide this form of parental attention and responsivity [64,103]. Parents could be helped to focus on the infant’s facial cues and behavior, think about what the infant is communicating and respond contingently. This type of intervention could make use of locally available health resources and is developed for nonspecialists [65–67].

Challenges & opportunities in adherence, disclosure & support

Evidence from existing and emerging treatment programs suggests that adherence among parents and children on ART is good and better than expected [68–72]. Barriers to adherence are frequently cited as being financial and social in nature and less frequently related to interpersonal experiences and challenges such as bad-tasting medications, unpleasant side effects, treatment stigma or lack of family support. Systematic and literature reviews of adherence illustrate a growing body of evidence that can guide practical strategies for maximizing adherence in poorly resourced settings [73,74]. Adherence behavior is seen to be influenced by many factors [75] including characteristics of the child, the caregiver(s) and family, the ART regimen and society and culture. Adherence strategies emphasize adopting a multidisciplinary team-based approach to anticipating challenges in adherence for parents and children, and using a variety of strategies, including assessing adherence as part of routine clinical care, providing ongoing case management to address situational barriers such as mental health issues, housing instability and substance abuse, and using behavioral strategies such as treatment buddies, stages of change counseling, family therapy, gastrostomy tubes, pill-swallowing techniques and flavoring agents. Ideally, strategies should be considered for delivery over time and not delivered solely for intensive periods.

While early indications of patient-level adherence are good, adherence is not a static concept and once achieved it must be maintained over time [76]. Keeping caregiving adults motivated once HIV illness abates and HIV is no longer a visual and salient physical threat, once longer-term side effects have begun to manifest and once treatment fatigue sets in is a challenge that will need to be faced. Similarly, as HIV-infected children grow older, enter adolescence and begin to demand more autonomy, maintaining treatment adherence for them can become a greater challenge, requiring more and somewhat different support approaches [74]. Disclosure support, whether it is disclosure of a child’s own HIV status or disclosure of a caregiver’s HIV status to a child, is considered to be an integral support component of comprehensive treatment programs [77,78]. Generally, evidence suggests that while caregivers have common concerns that disclosure may harm their children and cause difficulties in their caregiving relationships, this is seldom the case [79,80]. Instead, a lack of disclosure has been shown to increase behavioral and emotional difficulties among children and can jeopardize treatment outcomes in HIV-infected children. Research from other chronic and terminal illnesses such as cancer confirm that children are able to understand and conceptualize illness at far younger ages than generally perceived and that they benefit from an open dialogue and reassurance. Recommendations for practice suggest that school-aged children can and should be told their HIV status in order to improve their access to support [81]. Disclosure can improve the parent–child relationship and the child’s ability to understand and participate in HIV treatment and care. Parental, contextual and child-specific factors play an important role in the disclosure process. For the much larger group of HIV-exposed but -uninfected children, disclosure of maternal HIV status also plays an important role in the child’s well-being. Some of the known benefits of disclosure for mothers living with HIV are outlined in Box 2.

Box 2. Benefits of disclosure for mothers living with HIV.

  • ▪ Mothers’ disclosure to children has been linked to lower anxiety and depression and to higher perceived social support and family cohesion [79,80]

  • ▪ Disclosure alleviates stress regarding the need to hide physical and emotional functioning and allows older children to participate in future decision making [79]

  • ▪ Recommended treatments for HIV may require changes in lifestyle and family communication that benefit mothers [79]

  • ▪ Children can be a major motivation for mothers to increase their longevity [79,80]

  • ▪ After learning their diagnoses, many mothers focus on reducing their own health-risk behaviors and improving family relationships [79,80]

  • ▪ Mothers perceive better relations with children following disclosure, citing more closeness, expressed affection and supportive behaviors to their children [80]

However, disclosure levels among HIV-positive mothers to their uninfected children are often low (between 30 and 45%) [80], are delayed until late in childhood or early adolescence and disclosure is made more often to girl children than boy children [79]. This is a matter for concern, as high levels of HIV prevalence in sub-Saharan Africa makes it very likely that children will learn about HIV at increasingly younger ages, and delaying disclosure in such scenarios could worsen psychological and social outcomes for children. Furthermore, the heightened vulnerability of girl children in these contexts cannot afford to be further amplified, and low disclosure tends to limit exposed children’s social networks and support safety nets, often with adverse consequences such as increasing the burden of care placed on children when their adult caregiver succumbs to illness [82–84]. Evidence from research on disclosure in the USA and Europe suggests that disclosure is most commonly linked to the age and gender of the child and the stage of disease or illness of the mother [79]. Few mothers will disclose before their child is 7 years of age and most will disclose by the time their child reaches 10 years of age. In terms of maternal mental health, a mother’s disclosure to children has been linked to lower anxiety and depression, higher perceived social support and family cohesion and better emotional and behavioral outcomes for children [80]. There is a distinct lack of evidence and models of practice to support disclosure in poorly resourced settings.

Future perspective

Evidence-based medical guidelines on when and how to prevent and treat HIV are increasingly clear. Family-centered approaches represent the most appropriate and cost-effective models for responding to the challenge of HIV prevention, treatment and care in poorly resourced settings. As a first priority, programs need to ensure the provision of appropriate prevention, treatment and care to women before and during pregnancy and motherhood. Furthermore, maternal and child health services need to be integrated to ensure that children have timely access to treatment and that early child development is supported. Lastly, it is essential to find ways to work with local community resources and to engage with caregivers and infants in order to provide not only for their treatment, but also their health and development, and to enhance their coping skills and, ultimately, their life opportunities.

Importantly, given the challenges that HIV introduces to the family, one of the greatest emerging opportunities for large-scale programming in poorly resourced settings is to offer humanity and sensitivity regarding the interpersonal challenges facing mothers, fathers and families at any entry point to HIV treatment and care, while still delivering effective prevention treatment and care services. Disclosure and adherence, as cornerstones of the success of ART treatment, may be supported by healthcare practitioners, but cannot exclusively occur in healthcare facilities. Instead, positive living, adjustment to treatment and longer-term adherence and coping with HIV can occur and must be supported within the day-to-day lived experiences of children, their caregivers and the families. Living positively on ART, achieving optimal adherence and dealing with the social aspects of HIV disclosure all reside in the family context. In poorly resourced contexts, the family is often invisible, absent or difficult to engage because of logistical and structural barriers and service delivery models that are often highly centralized. Evidence suggests that larger investments in decentralized family-friendly services may hold significant benefits in terms of both cost and clinical outcomes.

Executive summary.

A new era of antiretroviral therapy in poorly resourced settings

  • ▪ The progress emerging from a growing number of antiretroviral treatment (ART) cohorts is encouraging, suggesting that concerns over patient adherence, the development of resistance and cost and operational limitations should not be allowed to dominate or delay the provision of life-saving ART for those who need it.

  • ▪ In light of this, there are opportunities to develop family-centered approaches to treatment and care towards the successful delivery of HIV treatment, care and support.

Family planning, antenatal care & prevention

  • ▪ Scientific evidence and clear guidelines exist to support the importance of primary prevention, improvements in the effectiveness of vertical transmission and the safety of breastfeeding for women in developing-country contexts.

  • ▪ A broad-based approach to preventing mother-to-child transmission can and needs to be cost-effective and promote the integration and scaling-up of health facilities.

  • ▪ Family planning and preventative services need to more effectively target sexually active adults, including men and adolescents, and should include family-centered approaches that engage male partners and consider the childbearing aspirations of HIV-positive couples.

Postnatal prevention, treatment & care

  • ▪ It is critical to strengthen the links between prevention of mother-to-child transmission programs and maternal and child health services, ensuring that all HIV-exposed children are tested for HIV early, that parents are counseled and prepared for testing and treatment initiation, that results are available, that children are referred in good time and that mothers and fathers themselves receive appropriate follow-up and support.

  • ▪ Early care and prevention needs to consider the important developmental milestones of early childhood, and family-centered programs need to support HIV-infected parents to improve their mental health and ensure adequate and sensitive child care. Early child development stimulation programs and rehabilitative services for HIV-infected children receiving ART need to be integrated into HIV treatment services.

Adherence, disclosure & support

  • ▪ Initial indications suggest that adherence to ART is good, although challenges are likely to emerge as treatment programs mature and patients begin to deal with longer-term management of treatment and treatment fatigue.

  • ▪ Increased disclosure of HIV status has benefits for both HIV-infected children and HIV-exposed but -uninfected children, and guidelines for health practitioners and parents need to be developed to support increased age-appropriate and supportive disclosure practices.

  • ▪ Current models of practice regarding adherence and disclosure support most commonly focus on healthcare centers and practitioners as modes of delivery. Adherence and disclosure support should also be delivered and supported within the family context.

Acknowledgments

The Africa Centre for Health and Population Studies is funded by a core grant from the Wellcome Trust (Grant number 082384/Z/07/Z), and A Stein was supported by the Wellcome Trust (Grant number 071571) (www.wellcome.ac.uk).

Footnotes

Financial & competing interests disclosure The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

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