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Background: As access to treatment increases, large numbers of HIV-positive parents are raising HIV-negative children. Maternal HIV disclosure has been shown to have benefits for mothers and children, however, disclosure rates remain low with between 30-45% of mothers reporting HIV disclosure to their children in both observational and intervention studies. Disclosure of HIV status by parent to an HIV-uninfected child is a complex and challenging psychological and social process. No intervention studies have been designed and tested in Southern Africa to support HIV-positive parents to disclose their status, despite this region being one of the most heavily affected by the HIV epidemic. Method. This paper describes the development of a family-centred, structured intervention to support mothers to disclose their HIV status to their HIV-negative school-aged children in rural South Africa, an area with high HIV prevalence. The intervention package includes printed materials, therapeutic tools and child-friendly activities and games to support age-appropriate maternal HIV disclosure, and has three main aims: (1) to benefit family relationships by increasing maternal HIV disclosure; (2) to increase children’s knowledge about HIV and health; (3) to improve the quality of custody planning for children with HIV-positive mothers. We provide the theoretical framework for the intervention design and report the results of a small pilot study undertaken to test its acceptability in the local context. Results: The intervention was piloted with 24 Zulu families, all mothers were HIV-positive and had an HIV-negative child aged 6-9 years. Lay counsellors delivered the six session intervention over a six to eight week period. Qualitative data were collected on the acceptability, feasibility and the effectiveness of the intervention in increasing disclosure, health promotion and custody planning. All mothers disclosed something to their children: 11/24 disclosed fully using the words «HIV» while 13/24 disclosed partially using the word «virus». Conclusion: The pilot study found the intervention was feasible and acceptable to mothers and counsellors, and provides preliminary evidence that participation in the intervention encouraged disclosure and health promotion. The pilot methodology and small sample size has limitations and further research is required to test the potential of this intervention. A larger demonstration project with 300 families is currently underway. © 2013 Rochat et al; licensee BioMed Central Ltd.
The Wellcome Trust-funded Africa Centre for Health and Population Studies (http://www.africacentre.com) is based in rural northern KwaZulu-Natal, South Africa. HIV prevalence in 2010, within the Africa Centre Demographic Surveillance Area (DSA), that includes 90,000 adults, was 23% among adults overall [39]. Over the period 2005–2010 the estimated annual incidence was about 3% in adults of all ages, reaching a high of nearly 7.5% in females aged 25–29 years old and over 5% in men 30–34 years old [40]. Whilst HIV prevalence is increasing due to the widespread availability of antiretroviral treatment (ART) there is no evidence of a declining HIV incidence since measurement started in 2003 [41]. The demographic profile of the study area shows that the majority of children live with their biological mothers, not with their fathers [42,43]. This intervention was therefore designed primarily for mothers, but is flexible in its inclusion of fathers as described below. The intervention package was developed to include printed materials, therapeutic tools and child-friendly activities and games to support age-appropriate maternal HIV disclosure. It has three main aims: (1) to benefit family relationships by increasing maternal HIV disclosure; (2) to increase children’s knowledge about HIV and health; (3) to improve the quality of custody planning for children with HIV-positive mothers. In line with the UK Medical Research Council revised guidelines for developing complex interventions [44] the Amagugu design is based on a comprehensive review of the evidence base and a clear theoretical understanding of what is needed to effect change in disclosure interventions, informed by what we know about children’s development at this age and the cultural context. A literature review on maternal HIV disclosure to children was conducted, finding a total of 58 studies, including two literature reviews [5,6] and a recent systematic review [7], all of which are reported on, and summarised, by the authors in a recently published Special Report [33]. In addition we reviewed the recent guidelines from the World Health Organization on HIV disclosure to children [45] that include the available evidence on maternal disclosure to HIV-negative children of primary school-age and highlight the lack of studies on this issue. The Amagugu design builds on a theoretical model developed from previous work [28,46] and contains six steps as outlined in Table Table1.1. The intervention is designed to provide the mother with the opportunity to receive information, and to plan and practise a series of intervention activities to be able to facilitate safe, developmentally appropriate, disclosure with her child. Fathers and other family members are encouraged to participate in activities, and the intervention can be used by other care-givers of the child. The HIV education materials developed for Session 4, 5 and 6 (see Table Table1)1) also have the potential to be adapted for use with HIV-infected children in this age range, although this does not fall within the scope of the current study. The Amagugu intervention detailing the six steps, purpose of the steps, materials and activities and session goals Once disclosure is achieved, the intervention encourages mothers to engage in health promotion activities including a clinic visit (Session 5); and to develop custody and care plans (Session 6). Importantly while the counsellor, either a lay counsellor or community health care worker (CHW), offers assistance and trains the mother towards disclosure, the mother undertakes disclosure with the child on her own. Similarly, the mother takes the child to the clinic independently, and completes a care plan and custody plan without the counsellor being present. This is to ensure parenting skills transference, self-efficacy and to build the mother’s confidence to deal with HIV issues with her child. This intervention has been carefully designed to achieve specific tasks, in a specific order, each session building on the one before. The intervention process is described in detail in a train-the-trainer modelled training manual and DVD. Three important principles related to the Southern African context informed the design and development of this intervention: There is growing acknowledgement of the key role played by families in managing the burden of HIV care in Southern Africa [47,48]. In this intervention when we refer to ‘family’ we are referring to the concept of the family relationship context within which the child is being raised, and which is the focus of this disclosure intervention. Family is thus broadly and functionally defined, suggesting that family members who are in relationship with one another, who live together and function as family, for whatever reasons, create a shared social reality for the child that is linked to the care and development of children in the context of maternal HIV illness [49-51]. The focus on the family relationship context is based on the assumption that family-like relationships have greater emotional intensity than most other social relationships and thus provide significant leverage for influencing the day-to-day care and support of children [52]. This family-centred intervention approach, like many in the literature on chronic illness, is designed to address several concurrent issues and thus remain generalisable to epidemic settings, and to have value beyond disclosure alone. Some of the more general issues addressed through the intervention approach include: Firstly, it focuses on strengthening family relationships through a specific family engagement process, as opposed to simply providing HIV education to the mother. This is important because improvements in the quality of the parent–child and family relationship have shown particular promise in improving outcomes in children and adolescents following maternal HIV disclosure [5-7]. Secondly, we consider the context of stigma and how this may have limited initial acceptance by the mother of her own HIV infection. In many epidemic contexts mothers may have received no prior counselling, we thus offer support and education to adjust to the changes that HIV brings within the family, attempting to reduce the social isolation, stress and worries of the HIV- positive parent [53,54]. Thirdly, it aims to help family members, and parents in particular, to prevent HIV from dominating family life and sacrificing normal family or parenting goals [52,55]. Promoting parental self-efficacy is important given the possible effects of living in stigmatized communities [56]. Lastly, the intervention approach intends to provide a new structure and focus for the family which is centred on parenting and quality care for children, with adjustments of roles and expectations to ensure optimal self-care of the HIV-positive mother, care of the child and health promotion at a family level [57,58]. The principles outlined above are important to the design of evidence-based family-centred HIV interventions; however, in Southern Africa public health resources are scarce and intervention approaches need to be inexpensive and feasible. In areas of high HIV prevalence clinics are overburdened, with lack of waiting areas or private rooms in which to counsel patients, and shortages of health care staff [59-61]. This intervention has, therefore, been designed to be conducted in the home setting, thus not burdening the health facilities, by lay counsellors or CHWs with no tertiary or formal health education, who will receive structured training to conduct this intervention [62]. The intervention materials were designed to achieve the goals of disclosure and to prepare the mother, emotionally, to undertake disclosure in a child-centred way. However, lay counsellors and CHWs also work in time-pressured, task-heavy, roles and compassion fatigue is commonplace [59-61]. Therefore, several of the activities, such as the My Life Line and My HIV Story exercises (see Table Table1)1) were developed to serve the dual purpose of preparing the mother for disclosure and keeping the counsellor compassionate and attentive. This intervention targets mothers in South Africa, and a younger age group of children than most previous studies, with the exception of the TRACK program in the United States (28). Whilst there is a dearth of intervention evidence on maternal disclosure globally, there is a significant body of literature around children’s understanding of illness linked to their developmental stage [63], and in particular children’s developmental capacity to understand and engage with illnesses such as cancer and HIV [64]. Literature relating to maternal terminal illness, but not HIV, suggests that children benefit from being provided with illness-related information, explanations about what they might see and expect in the patient, reassurance that they will be looked after even in difficult circumstances; and comfort that being upset is ‘allowed’ and ‘normal’ under the circumstances [52,65,66]. We also know that how the disclosure event is executed can influence the child’s ability to cope with the information in the future [5,6]. Therefore, this intervention is designed to take a structured approach, similar to the approach of the TRACK program (28), and introduces specific guidance, training and planning for the mother towards the disclosure event, including the provision of child-friendly and developmentally appropriate learning materials for use as part of the intervention. The counsellor ‘trains’ the mother in a step-by-step approach, and practises with her the use of the materials and tools until she is competent and confident to use them [53]. This intervention is hinged on a strengths-based model, and counselling aims to deliver core communications to build the mothers’ confidence and self-efficacy as a ‘good’ parent, ensuring mothers feel understood and cared about, are reminded of their resilience and achievements, understand the important role they play in their children’s healthy development and have their confidence built through practising parenting skills. Data are collected at baseline, including details relating to the mother’s health, as the literature suggests that disclosure to children often occurs as a result of illness or hospitalisation; prior disclosure of HIV status to other adults as we expected issues related to stigma and a lack of disclosure at the family level might influence the feasibility and acceptability of this intervention; and mother’s literacy in English and Zulu as illiteracy may prove a barrier to the usability of the tools. At baseline, prior HIV disclosure to any or all children within the family, as well as the mother’s intentions to disclose, were not considered as inclusion or exclusion criteria as we aimed to be as inclusive as possible in this exploratory pilot study. However, detailed data were collected on prior disclosures with reasons for, and against, disclosure. Maternal disclosure to the study child following participation in the study was collected at Visit 5. To be as inclusive as possible we considered all levels of disclosure including whether the disclosure was ‘partial’ (i.e. the mother explained that she has a ‘virus’ and what this does in her body) or ‘full’ (i.e. the mother explained that she has a virus called ‘HIV’ and what this does in her body). Open-ended qualitative measures around mother’s perceptions of the disclosure event and the materials, the child’s initial reactions to disclosure, and how the mother felt about the materials were also collected. If mothers chose not to disclose following the training, they were still encouraged to complete the health promotion and custody planning components of the intervention. Pre and post data collection, including qualitative measures, were completed for all mothers irrespective of the level of disclosure they achieved. Further data were collected at Visit 7 on whether the mother and child attended the health promotion clinic visit and their experiences of this, and whether a care plan was drawn up for the child. Data were also collected on the impact of the intervention at a family level. The intervention was piloted with 24 Zulu families within the Africa Centre Demographic Surveillance Area from November to December 2010. The mothers (all HIV-positive) and children (all HIV-negative) had been part of a previous Africa Centre study and had learned of their HIV status during their pregnancy with the study child, now aged 6–10 years [67]. To be eligible for inclusion in this study mothers had to be HIV-infected at the time of the original study, to have an HIV-uninfected child, to be currently resident in the study area and to be living with the study child, and to be in reasonable physical and mental health to complete the intervention activities. Where appropriate, mothers not already on HIV treatment were referred to the local HIV treatment and care programme for medical assessment. As previously noted, baseline disclosure to children or family members and intention to disclose to children or family members was not used as part of the eligibility screening in this pilot study. A convenience sample of 24 mothers who all lived in one geographical peri-urban area was approached to facilitate completing the pilot field work in a reasonable time frame. A list of all available mothers from this area was produced, ordered by study ID from the original study, and a consecutive series of mothers were approached by telephone and home visits until 24 mothers were enrolled. A detailed description of the characteristics of participating mothers is included in Table Table22. Maternal HIV health and prior HIV disclosure experience Three lay counsellors, with previous counselling experience and training in the Amagugu intervention, delivered the intervention over a six to eight week period. Ethics permission was granted by the Biomedical Research Ethics Committee of the University of KwaZulu-Natal. Written informed consent was obtained from each woman. Data were entered into a specifically designed Microsoft Access database. Quantitative analyses were carried out using Stata (Version 11.2; Stata Corporation, USA); qualitative data were transcribed, translated, extensively reviewed and categorised by common thematic area.
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