advanced search

<< Back To Home

CHILDREN GROWING UP WITH HIV INFECTION: THE RESPONSIBILITY OF SUCCESS

Wednesday, 19th of February 2014

CHILDREN GROWING UP WITH HIV INFECTION: THE RESPONSIBILITY OF SUCCESS

The Lancet Early Online Publication, 13 February 2014

doi:10.1016/S0140-6736(13)62328-4 Cite or Link Using DOI

Copyright © 2014 Elsevier Ltd All rights reserved.

 

Original Text

Sarah Bernays PhD a, Prudence Jarrett MBBS b, Katharina Kranzer PhD a, Dr Rashida A Ferrand PhD a c

An estimated 3·4 million children are living with HIV, more than 90% in sub-Saharan Africa.1 Those working in paediatric HIV care are now cautiously optimistic. Comparing the landscape with 10 years ago when HIV-infected infants faced inevitable death, those born with HIV now have access to antiretroviral therapy (ART) so that increasing numbers of children are surviving to adolescence and beyond.2 Coupled with this progress, the number of new infections has substantially decreased (from 450 000 in 2005, to 260 000 in 2012) because of scale-up of interventions to prevent mother-to-child HIV transmission (PMTCT), resulting in a shift of burden of HIV towards older children.3 Additionally, large numbers of children with slowly progressing disease, infected before PMTCT interventions became widely available, are presenting for the first time in adolescence, having lived with untreated HIV for a decade or more.4

Aversion of the deaths of so many HIV-infected children over the past decade has been a substantial clinical, public health, and moral achievement. However, 300 000 infants were born with HIV in 2011, and globally only 34% of the 1·6 million children in need of ART had access to treatment in 2012.3 Although the drive to increase access to PMTCT interventions and ART needs to continue, policy makers and health-care providers should focus beyond the goal of prolonging survival of HIV-infected children and concentrate on their broader health to ensure that they are able to achieve an optimum quality of life. To accomplish this aim they need to better understand and respond to the clinical, social, and structural complexities associated with management of HIV-infected children as they grow older.

We are only beginning to learn about the consequences of HIV infection acquired at a crucial period of development when the immune system is not fully developed. Over and above the typical infectious manifestations, longstanding HIV infection is associated with growth failure and damage to organs, including the brain, heart, and lung, which once established is not always reversible with ART.5 There is thus a heavy burden of disabilities related to HIV, such as blindness, deafness, and learning impairment, which needs multidisciplinary care that is not provided in HIV care programmes. Clinical management is complicated by sparse knowledge of the long-term adverse effects of ART in children, particularly given that they are exposed to drugs when their physiological systems are immature.

Data for the pharmacokinetics of drugs in older children are scarce, and the need for weight-based dosing means frequent changing of doses as the child grows, and a risk of wrong dosing. Although HIV-infected adults are treated with fixed drug combinations given as one pill per day, these regimens are not available for children. Therefore older children and adolescents often have to take multiple tablets with complex dosing regimens at a time when they are struggling most with adherence. However, availability of effective, correctly dosed drugs with simpler formulations is not enough. Maintaining of sustained adherence to ART is the crux of successful treatment. Treatment failure results in drug resistance, disease progression, and risk of onward HIV transmission once sexual debut occurs. Children face the prospect of having to take ART with optimum adherence for 20 years longer on average than do adults, but fewer treatment regimens are available to them. Adherence to treatment of chronic illnesses drops off during adolescence and, unfortunately, HIV is no exception.6

Children face substantial social barriers to maintaining the levels of adherence expected of them by their clinicians. What happens outside the clinic inevitably affects the ability of children to adhere to clinical guidance. The stigma that surrounds HIV leads to children taking their treatment in secret. Taking treatment every day of their lives is made harder within the context of poverty, where they might be living in crowded households with little privacy and access to food.7 Additionally, childrens ability to adhere to treatment is partly dependent on the support, guidance, and information that they receive from caregivers.8

The complexity of the social milieu of children growing up with HIV is vastly underappreciated. Exposure to stigma has a profound effect on their experience of growing up with HIV. Their HIV status is written across their bodies through the visual scars of skin disease, through being shorter and physically weaker than their peers, and having delayed puberty.5, 9 As is common among young people, desire to conform with peers could inadvertently lead them not only to stop treatment, but can also instil in them a pronounced sense of social isolation by being marked out as different, which creates a heavy psychological burden.10 The socially embedded reasons that underpin poor adherence show that if investment in biomedical interventions to address HIV is insufficient, some of the most pressing challenges that these children face will not be addressed.

Childrens experiences are shaped by their relative lack of autonomy compared with adults. Efforts to address the social challenges that these children face must not ignore the importance of specific relationships such as the child—caregiver or child—teacher dyad. As with adherence, their knowledge about and attitude towards their HIV status is affected by their caregivers, who might be ill-prepared to address the issue of HIV with them. HIV status disclosure is a step-wise and gradual process, and often starts with a health-care worker informing the caregiver about the childs HIV status. This step should be followed by disclosure to the child, family, and wider community by the caregiver and child. Delayed and suboptimum disclosure to children of their HIV status is a common experience, leaving them to cope with their disease within an atmosphere of secrecy.11 In combination with childrens low personal status in society and poor access to social resources, this secrecy curtails the opportunities that they have to discuss, learn, understand, and thus accept their illness. Caregivers silence seems to stem from an understandable, but misplaced, desire to protect children from knowing about their HIV status and results in children continuing to be confused about their future as they approach adulthood.12

HIV is a household disease. Having inherited the virus from a parent they are more likely to be orphaned and have changing or absent guardianship, which could lead to being isolated through neglect or separation from other family members. Children have to negotiate the complex demands of treatment, social pressures, and vulnerable health within the context of bereavement and disrupted care, without having necessarily developed the skills to manage these circumstances.13 It is important not to underestimate the potential psychological effects of the awareness of their limited mortality on their wellbeing, which might be both reinforced through witnessing HIV-related deaths within the household or through taking treatment—a daily reminder of their own infection.14 These children are more likely to have lower educational achievements and consequently less chance of gaining economic independence, as little financial support for school fees exacerbates the risks of interrupted school attendance and the existing learning disadvantages that they might face through HIV-related cognitive impairment.9, 15 Compounded by a cycle of poverty, these interconnecting factors shape the ability of these children to manage their health and prepare for adult life.

The structural complexities involved in caring for children growing up with HIV are also substantial. For those not yet diagnosed, age-appropriate HIV testing services are woefully inadequate. Children often have fluid guardianship arrangements, and the need for consent from a guardian to undergo HIV testing results in diagnosis of HIV infection being delayed until presentation with advanced disease in older childhood.9 The consequences of the immediate and necessary focus on saving lives through the rollout of ART has inadvertently created a group of children growing up with chronic illness and disabilities. Improved survival as a result of ART has starkly highlighted the lack of preparedness among health systems to deal with the complex needs of these children as they grow older. The need to invest in support services for older children and adolescents is commonly outweighed by the competition for resources for adults and young children, particularly in the present financially constrained environment, and this age group risks falling between the gaps of poorly coordinated health systems.

Within this context it is understandable to think that the odds are so far stacked against them that poor outcomes for children are inevitable. Although the problems raised are immensely challenging, what is needed is not necessarily costly interventions. Diagnostic services need to target older children specifically, and links between HIV care and rehabilitation services should be developed. Training of health-care workers should include recognition of the diverse needs of older children. Simple, thoughtful, and sustainable psychosocial support services substantially improve outcomes in children.16 Children do well when they are equipped to understand their illness. We need to have practical disclosure strategies that enable children to learn about what it means to grow up with HIV, their responsibilities, and the skills to manage the social consequences of living with HIV. These strategies need to be robustly integrated into clinical care, with health-care workers better trained in how to support caregivers to provide effective information and resources to engage in difficult, but crucial, ongoing conversations. Now is the time to develop specific policies that engender honest and respectful discussion with children about growing up with HIV, including their sexual and reproductive health. Adolescents need to be better prepared for transition to adult services to ensure that they are not lost to follow-up at this important juncture.

There is much to do and learn. Management of chronic illness through provision of episodic emergency care is insufficient, and sustainable multidisciplinary services need to be developed for children growing up with chronic illnesses. We have an opportunity to develop imaginative interventions to support HIV-infected children, which could also teach us how to manage those affected by other chronic disorders. Furthermore, research in this group can contribute to understanding of the pathogenesis of HIV and provide an insight into the processes that have led to long-term survival. Set against the backdrop of the extensive adult HIV epidemic in sub-Saharan Africa, the burden of children living with HIV could seem insignificant in comparison. But there is a moral imperative to meet the needs of the children who now have a real prospect of reaching adulthood. They deserve more than just being kept alive.

Contributors

RAF conceived the idea of the Viewpoint. KK, SB, PJ, and RAF cowrote the manuscript drafts.

Declaration of interests

We declare that we have no conflicts of interest.

Acknowledgments

RAF is funded by the Wellcome Trust through an Intermediate Fellowship (095878/Z/11/Z). SB runs a research programme jointly funded by the Economic and Social Research Council, the Department for International Development, and the National Institute for Health Research. The funders had no role in the writing of this Viewpoint or in the decision to submit for publication.

1 UNAIDS, WHO. Global HIV/AIDS response: epidemic update and health sector progress towards universal access. Geneva: UNAIDS and WHO, 2011.

2 Judd A, Doerholt K, Tookey PA, et althe Collaborative HIV Paediatric Study (CHIPS), the National Study of HIV in Pregnancy and Childhood (NSHPC). Morbidity, mortality, and response to treatment by children in the United Kingdom and Ireland with perinatally acquired HIV infection during 1996—2006: planning for teenage and adult care. Clin Infect Dis 2007; 45: 918-924. CrossRef | PubMed

3 UNICEF. Global update on HIV treatment 2013: results, impact and opportunities. Geneva: UNICEF, 2013.

4 Ferrand RA, Munaiwa L, Matsekete J, et al. Undiagnosed HIV infection among adolescents seeking primary health care in Zimbabwe. Clin Infect Dis 2010; 51: 844-851. CrossRef | PubMed

5 Ferrand RA, Bandason T, Musvaire P, et al. Causes of acute hospitalization in adolescence: burden and spectrum of HIV-related morbidity in a country with an early-onset and severe HIV epidemic: a prospective survey. PLoS Med 2010; 7: e1000178. CrossRef | PubMed

6 Nachega JB, Hislop M, Nguyen H, et al. Antiretroviral therapy adherence, virologic and immunologic outcomes in adolescents compared with adults in southern Africa. J Acquir Immune Defic Syndr 2009; 51: 65-71. CrossRef | PubMed

7 Bikaako-Kajura W, Luyirika E, Purcell DW, et al. Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda. AIDS Behav 2006; 10 (suppl): S85-S93. PubMed

8 Fetzer BC, Mupenda B, Lusiama J, Kitetele F, Golin C, Behets F. Barriers to and facilitators of adherence to pediatric antiretroviral therapy in a sub-Saharan setting: insights from a qualitative study. AIDS Patient Care STDS 2011; 25: 611-621. CrossRef | PubMed

9 Bandason T, Langhaug LF, Makamba M, et al. Burden of HIV among primary school children and feasibility of primary school-linked HIV testing in Harare, Zimbabwe: a mixed methods study. AIDS Care 2013; 25: 1520-1526. PubMed

10 Calabrese SK, Martin S, Wolters PL, Toledo-Tamula MA, Brennan TL, Wood LV. Diagnosis disclosure, medication hiding, and medical functioning among perinatally infected, HIV-positive children and adolescents. AIDS Care 2012; 24: 1092-1096. CrossRef | PubMed

11 Biadgilign S, Deribew A, Amberbir A, Escudero HR, Deribe K. Factors associated with HIV/AIDS diagnostic disclosure to HIV infected children receiving HAART: a multi-center study in Addis Ababa, Ethiopia. PLoS One 2011; 6: e17572. CrossRef | PubMed

12 Domek GJ. Debunking common barriers to pediatric HIV disclosure. J Trop Pediatr 2010; 56: 440-442. CrossRef | PubMed

13 Tadesse AW, Berhane Tsehay Y, Girma Belaineh B, Alemu YB. Behavioral and emotional problems among children aged 6—14 years on highly active antiretroviral therapy in Addis Ababa: a cross-sectional study. AIDS Care 2012; 24: 1359-1367. CrossRef | PubMed

14 Cluver LD, Orkin M, Boyes ME, Gardner F, Nikelo J. AIDS-orphanhood and caregiver HIV/AIDS sickness status: effects on psychological symptoms in South African youth. J Pediatr Psychol 2012; 37: 857-867. CrossRef | PubMed

15 Le Doaré K, Bland R, Newell ML. Neurodevelopment in children born to HIV-infected mothers by infection and treatment status. Pediatrics 2012; 130: e1326-e1344. CrossRef | PubMed

16 Skovdal M, Daniel M. Resilience through participation and coping-enabling social environments: the case of HIV-affected children in sub-Saharan Africa. Afr J AIDS Res 2012; 11: 153-164. PubMed

a London School of Hygiene and Tropical Medicine, London, UK

b University of Manchester Medical School, Manchester, UK

c Biomedical Research and Training Institute, Harare, Zimbabwe

Correspondence to: Dr Rashida A Ferrand, Clinical Research Department, London School of Hygiene and Tropical Medicine, Keppel Street, London WC1E 7HT, UK