Comment

Integrating disclosure support into family HIV care Rochat and colleagues1 have done a groundbreaking study. This is the first randomised trial of a disclosure support programme for families affected by HIV/AIDS in a high-prevalence, low-income setting. The Amagugu intervention is a theoretically informed, low-cost intervention that can be delivered by lay counsellors alongside public health-care services. Rochat and colleagues tested the intervention using robust methods, including intention-to-treat analyses and a comparison group receiving enhanced standard of care. Notably, the intervention had substantial positive effects on increased disclosure, children’s access to clinical care, and succession planning. Of course, important questions have yet to be answered. Future pragmatic testing of the programme will be important to assess effectiveness and efficacy. Any scale-up of a disclosure programme into health care or services managed by non-governmental organisations would probably be provided by less experienced staff, with reduced supervision, and with lower treatment fidelity. Expanded programme delivery would probably not be constrained to a particular age group of children or to HIV-uninfected children, as in this trial. Adaptations might be necessary to include disclosure to children of their own HIV exposure or infection status. The Amagugu intervention focused on mothers and their children, perhaps reflecting some of the challenges of sample size within expensive randomised trials. As the authors point out, it will be of enormous value to identify how we can support paternal disclosure and whether involvement of fathers in the disclosure process could improve maternal and child outcomes. Although some fathers are not coresident, they are an important part of a child’s understanding of their family and HIV. This trial also raises a wider question to the field of HIV research. We have known for decades that HIV disclosure is an important gateway—and often a prerequisite— for health-seeking behaviour. In 2011, WHO identified that disclosure of HIV status to children is a major challenge for parents.2 Why, then, is this the first trial of a disclosure support programme in a low-income or middle-income country? This evidence gap is apparent with other psychosocial gateways. We know that mental health problems

and family dysfunction are associated with HIV-risk behaviours for AIDS-affected children.3 Yet, in a systematic review in 2017, only six psychosocial interventions tested in randomised controlled trials had occurred in Africa.4 AIDS-related bereavement is associated with long-term negative mental health effects on children and adolescents, and earlier this year, Thuman and colleagues5 reported the results of the first randomised trial of a grief intervention for children in a high HIV-prevalence setting. Non-disclosure, poor mental health, and psychosocial distress are important HIV outcomes to address in their own right. Left untreated, these outcomes also present enduring barriers to health-care uptake, adherence, HIV prevention, and quality of life. Nevertheless, only a handful of trials have been completed, compared with hundreds of trials on behavioural prevention programmes, HIV knowledge, and educational interventions. We see this despite the fact that rigour in social science is possible and evidence-based programming a necessity, so the reasons for this discrepancy are not clear. Perhaps family interventions are not valued. Perhaps AIDS-affected children are seen as less important than AIDS-affected adults. Perhaps we are driven by a desire to prevent HIV rather than deal with the messy realities that the disease brings. But what is clear is that, as an HIV-research community, we are not meeting the range of needs of AIDS-affected populations. And beyond research, we are missing integrated care with provision for mental health and physical health. We should certainly commend Rochat and colleagues for this successful trial, and others testing innovative psychosocial interventions for families, for example.6,7–12 But 35 years into the epidemic, we should not be at the stage of identifying single programmes, but rather be reviewing multiple trials in meta-analyses to determine the most effective of many options. This trial is novel and groundbreaking, but it shouldn’t be.

Lancet HIV 2017 Published Online August 23, 2017 http://dx.doi.org/10.1016/ S2352-3018(17)30153-4 See Online/Articles http://dx.doi.org/10.1016/ S2352-3018(17)30133-9

*Lucie Cluver, Lorraine Sherr Department of Social Policy and Intervention, Oxford University, Oxford OX1 2ER, UK (LC); Department of Psychiatry and Mental Health, University of Cape Town, South Africa (LC); and Institute for Global Health, University College London (LS) [email protected]

www.thelancet.com/hiv Published online August 23, 2017 http://dx.doi.org/10.1016/S2352-3018(17)30153-4

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Comment

We declare no competing interests. 1

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Rochat TJ, Stein A, Cortina-Borja M, Tanser F, Bland RM. The Amagugu intervention for disclosure of maternal HIV to uninfected primary-school aged children in South Africa: a randomised controlled trial. Lancet HIV 2017; published online Aug 23. http://dx.doi.org/10.1016/S2352-3018(17)30133-9. WHO. Guidelines on HIV disclosure counselling for children up to 12 years of age. Geneva: World Health Organisation, 2011. Sherr L, Cluver LD, Betancourt TS, Kellerman SE, Richter LM, Desmond C. Evidence of impact: health, psychological and social effects of adult HIV on children. AIDS 2014; (suppl 3): S251–59. Skeen S, Tomlinson M, Croome N, Sherr L. Interventions for improving the psychosocial well-being of children affected by HIV and AIDS: a systematic review. Vulnerable Children and Youth Studies, 2017; 12: 91–116. Thurman TR, Luckett BG, Nice J, Spyrelis A, Taylor TM. Effect of a bereavement support group on female adolescents’ psychological health: a randomised controlled trial in South Africa. Lancet Glob Health 2017; 5: e604–14. Bhana A, Mellins CA, Petersen I, et al. The VUKA family program: piloting a family-based psychosocial intervention to promote health and mental health among HIV infected early adolescents in South Africa. AIDS Care 2014; 26: 1–11.

Tomlinson M, Doherty T, Ijumba P, et al. Goodstart: a cluster randomised effectiveness trial of an integrated, community-based package for maternal and newborn care, with prevention of mother-to-child transmission of HIV in a South African township. Trop Med Int Health 2014; 19: 256–66. 8 Richter L, Rotheram-Borus MJ, Van Heerden A, et al. Pregnant women living with HIV (WLH) supported at clinics by peer WLH: a cluster randomized controlled trial. AIDS Behav 2014; 18: 706–15. 9 Rotheram-Borus M, Lester P, Song J, et al. Intergenerational benefits of family-based HIV interventions. J Consult Clin Psychol 2006; 74: 622–27. 10 Grimwood A, Fatti G, Mothibi E, Malahlela M, Shea J, Eley B. Community adherence support improves programme retention in children on antiretroviral treatment: a multicentre cohort study in South Africa. J Int AIDS Soc 2012; 15: 17381. 11 Ssewamala FM, Karimli L, Torsten N, et al. Applying a family-level economic strengthening intervention to improve education and health-related outcomes of school-going AIDS-orphaned children: lessons from a randomized experiment in southern Uganda. Prev Sci 2016; 17: 134–43. 12 Visser M, Finestone M, Sikkema K, et al. Development and piloting of a mother and child intervention to promote resilience in young children of HIV-infected mothers in South Africa. Eval Program Plann 2010; 35: 491–500.

www.thelancet.com/hiv Published online August 23, 2017 http://dx.doi.org/10.1016/S2352-3018(17)30153-4

Integrating disclosure support into family HIV care.

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