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Babies of a pandemic

2005, Archives of Disease in Childhood

LEADING ARTICLE 116 Infant development ....................................................................................... Babies of a pandemic A Stein, G Krebs, L Richter, A Tomkins, T Rochat, M L Bennish ................................................................................... Infant development and maternal HIV T he effect of maternal HIV on infant development is a major concern because the virus has become so widespread among women of childbearing age. According to a United Nations report published in October 2003, half the new cases of HIV infection that occur across the world each year are among 15–24 year olds.1 This group, constituting two and a half million people, are the next generation of parents. The situation is particularly catastrophic in sub-Saharan Africa where widespread poverty and underdevelopment already undermine children’s health and wellbeing.2 It is estimated that 10 million people in this region between the ages of 15 and 24, and up to 45% of pregnant women, are infected.3 With this recognition of the high prevalence of HIV in pregnant women in parts of sub-Saharan Africa, major efforts have been directed at developing and implementing interventions to prevent mother-to-child transmission. These efforts have been largely successful: antiretroviral medication, caesarean section, and locally appropriate feeding practice can now reduce transmission from 40% to below 10%.4 In subSaharan Africa these interventions are unfortunately not widely available, but nonetheless, it is still the minority of children who are infected.4 Orphaning is increasing in subSaharan Africa as rates of adult mortality have started to accelerate.5 However, by far the largest group of vulnerable young children are those living with an HIV infected mother. In sub-Saharan Africa approximately 70% of infected mothers survive for at least the first five years of their children’s lives,6 and this number will increase with the rollout of antiretroviral medication. It is known that the early years of life are crucial for a child’s development, and it is likely that maternal HIV disrupts the rearing environment, thereby putting these children at risk. A key question arises as to the nature of the impact of maternal HIV on the development of infected and uninfected children. Although research is limited, especially in the developing world, studies that have examined the impact www.archdischild.com of maternal HIV show that vertically infected infants are at increased risk of developmental impairments in a number of domains, including mental, motor, and emotional.7–14 There is some inconsistency in the literature as to the exact nature of the impairments suffered. Some studies have found impaired cognitive and motor development,7 8 15 some have found that development is principally impaired in the motor domain,16 while others have found that the nature of impairment changes over time.17 Language delays have also been observed in infected children.18 An important gap in the research is that very few studies have followed up children beyond 24 months of age. This is crucial since many impairments (for example, in language) and disturbances (for example, in behavioural and emotional development) are most likely to become evident after this age. It is not surprising that HIV has adverse effects on child development since the HIV virus has a direct destructive effect on neuronal tissue in the central nervous system. Where encephalopathies result, they may be rapid and progressive leading to loss of developmental milestones, subacute with a variable course, or static with a failure to progress developmentally. The more severe the encephalopathy, the worse is the child’s prognosis.19 20 In addition to the evidence regarding vertically infected children, there is evidence that uninfected children born to mothers with HIV also manifest disturbances in their development. These children have been found in some studies to have significantly more attentional, social, and behavioural problems,21–23 although not all studies have found such adverse effects.7 Uninfected children whose mothers have HIV are important because they form the largest sub-group of young children. An important question that follows from this is: what mechanisms can account for these indirect effects of maternal HIV on infants? The exact mechanisms are yet to be elucidated, but it is very likely that effects occur through compromised parenting and childcare practices. There are two main bodies of research that together support this view. First, that a positive HIV diagnosis renders an individual vulnerable to depression and diminished social support; and second, from research outside the HIV context, that postnatal depression and diminished social support are associated with impairments in children’s development. There is considerable research on the psychological effects of HIV, but it has tended to focus on men in Europe and North America. The relatively few studies of women with HIV have shown consistently that the psychological impact of being HIV positive is profound and may be especially severe during pregnancy. Most women in Africa discover their HIV status during pregnancy. Thus, a mother is diagnosed with a life threatening condition, while at the same time preparing to bring a new life into the world. The studies that have been conducted suggest that a significant proportion of such women experience depression and suicidal ideation, as well as disruption of their social and material support networks.24–35 It has been well established in studies not involving HIV/AIDS, that maternal depression and lack of social support have adverse effects on children’s development. Postnatal depression, particularly in disadvantaged communities, has been shown to be associated with impairments in the child’s growth,36 and his/her social, emotional, and cognitive development.37 By school age, children of women who suffer postnatal depression are at risk for showing externalising and internalising behavioural problems, and they have lower social skills and academic achievement.38 A key way in which maternal depression affects children’s development is by disrupting the mother-infant relationship as well as routine parenting functions,37 and two studies have shown that HIV infection is associated with similar disturbances in mother-child interactions.13 39 Currently, no studies in the HIV literature have examined maternal psychosocial functioning in relation to mother-child interactions or child development. The question that most urgently needs to be addressed is: what can be done to help infected women and their young children, and in particular, what intervention strategies are necessary to minimise the impact of maternal HIV? There is good reason to believe that early psychosocial interventions in this population have the potential to enhance infant development. Psychosocial interventions in disadvantaged communities (without HIV), delivered during pregnancy and early childhood, have been shown to provide long term benefits to children and their families. For LEADING ARTICLE example, a 15 year follow up study by Olds and colleagues of a group of mothers randomly allocated to nurse home visiting during pregnancy and early childhood, has shown considerable benefit. Relative to the comparison groups, these children had fewer episodes of running away, less criminal behaviour, fewer sexual partners, and fewer behavioural problems related to drugs and alcohol.40 However, not all studies have found such interventions to be effective,40 indicating that interventions need to be evidence based and carefully formulated. Furthermore, they need to be culturally and locally appropriate, and interventions that have been established in Western countries should not simply be ‘‘lifted’’ without first evaluating them in an appropriate developing world context. The needs of children who become orphaned must also be addressed. However, the issues here are complex. In parts of sub-Saharan Africa, particularly in rural areas, children are regarded as belonging to, and being the responsibility of, kin rather than to one or two parents. Several reviews have found that the overwhelming response to children affected by HIV/AIDS through orphaning is extended family care.41 42 However, family care for affected children is less common in urban areas. Many non-governmental organisations (NGOs) are putting in place local programmes in an attempt to support the care of these children.43 Both governmental and non-governmental organisations need to work together to develop a comprehensive approach to this problem, and enormous resources will be required. It should be emphasised that despite all the adversity, many women who suffer from HIV/AIDS seem to remain psychologically healthy, cope well, and provide sensitive care and love for their young children. It is well known from research outside the HIV/AIDS context that having a confiding relationship and a supportive family and community plays a key role.44 However, the issue of how some families in the developing world remain functioning well in the face of HIV/AIDS, often without antiretroviral treatment, is a crucial area for future research. The extended family or clan systems may well be an important protective mechanism, but at present these relationships have not been explored. Clearly enormous funds are needed to provide for the basic material needs of affected children and families. In addition, intervention programmes that are sustainable, culturally appropriate, and cost effective are urgently required to support mothers with HIV and their 117 young children. A serious gap at present is a real understanding of the processes involved in maternal HIV, mental health, and infant development. These need to be clarified by focused research, in order to help define effective programmes to promote child development in HIV affected communities. Communities themselves are clearly struggling, and may be coping bravely. In some cases local initiatives are being put in place.45 While major resources are now available for increasing the numbers of HIV infected individuals who receive antiretrovirals, there is little attention given to the development of children who are affected, even though they are not infected themselves. New initiatives including the Global Fund to Fight AIDS, Tuberculosis and Malaria, and new money from international agencies such as the Department for International Development, provide a vital opportunity to make a contribution to this effort. Arch Dis Child 2005;90:116–118. doi: 10.1136/adc.2004.049361 ...................... Authors’ affiliations A Stein, G Krebs, Section of Child and Adolescent Psychiatry, University of Oxford, UK L Richter, Child, Youth and Family Development Division, Human Sciences Research Council, KwaZulu Natal Province, South Africa A T Tomkins, Centre for International Child Health, Institute of Child Health, University College London, UK T Rochat, M L Bennish, Africa Centre for Health and Population Studies, Mtubatuba, South Africa Correspondence to: Prof. A Stein, Section of Child and Adolescent Psychiatry, University of Oxford, Warneford Hospital, Oxford OX3 7JX, UK; [email protected] REFERENCES 1 UNFPA. Investment in adolescents’ reproductive health is critical to fighting poverty and HIV/AIDS, United Nations Population Fund, 2003. 2 Richter LM. Poverty, underdevelopment and infant mental health. J Paediatr Child Health 2003;39:243–8. 3 United Nations. Report on the global HIV/AIDS epidemic 2002. Geneva: UNAIDS/WHO, 2002. 4 Newell ML. Prevention of mother-to-child transmission of HIV: challenges for the current decade. Bull World Health Organ 2001;79:1138–44. 5 UNAIDS. Fact Sheet 2002: Sub-Saharan Africa, UNAIDS, 2002. 6 Nakiyingi JS, Bracher M, Whitworth JA, et al. Child survival in relation to mother’s HIV infection and survival: evidence from a Ugandan cohort study. AIDS 2003;17:1827–34. 7 Drotar D, Olness K, Wiznitzer M, et al. Neurodevelopmental outcomes of Ugandan infants with human immunodeficiency virus type 1 infection. Pediatrics 1997;100:e5. 8 Nozyce M, Hittelman J, Muenz L, et al. Effect of perinatally acquired human immunodeficiency virus infection on neurodevelopment in children during the first two years of life. Pediatrics 1994;94:883–91. 9 Aylward EH, Butz AM, Hutton N, et al. Cognitive and motor development in infants at risk for human immunodeficiency virus. Am J Dis Child 1992;146:218–22. 10 Chase C, Ware J, Hittelman J, et al. 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Trauma of discovery: women’s narratives of being informed they are HIV-infected. AIDS Care 1997;9:523–38. 27 Sherr L, Petrak J, Melvin D, et al. Psychological trauma associated with AIDS and HIV infection in women. Counselling Psychology Quarterly 1993;6:99–108. 28 Cowdery JE, Pesa JA. Assessing quality of life in women living with HIV infection. AIDS Care 2002;14:235–45. 29 Simoni JM, Ng MT. Trauma, coping and depression among women with HIV/AIDS in New York City. AIDS Care 2000;12:567–80. www.archdischild.com LEADING ARTICLE 118 30 Giovanola S. Psychological differentiation, depression, and patterns of coping with stress in HIV-positive mothers (immune deficiency). Dissertation, 2001. 31 Sherr L. Suicide and AIDS: lessons from a case note audit in London. AIDS Care 1995;7(suppl 2):S109–116. 32 Mellins CA, Ehrhardt AA, Rapkin B, et al. Psychosocial factors associated with adaptation in HIV-infected mothers. AIDS and Behavior 2000;4:317–28. 33 Hudson AL, Lee KA, Miramontes H, et al. Social interactions, perceived support, and level of distress in HIV-positive women. JANAC: Journal of the Association of Nurses in AIDS Care 2001;12:68–76. 34 Comer LK, Henker B, Kemeny M, et al. Illness disclosure and mental health among women with HIV/AIDS. J Community Appl Social Psychol 2000;10:449–64. 35 Simoni JM, Demas P, Mason HRC, et al. HIV disclosure among women of African descent: 36 37 38 39 associations with coping, social support, and psychological adaptation. AIDS and Behavior 2000;4:147–58. Patel V, DeSouza N, Rodrigues M. Postnatal depression and infant growth and development in low income countries: a cohort study from Goa, India. Arch Dis Child 2003;88:34–7. Murray L, Cooper P. Intergenerational transmission of affective and cognitive processes associated with depression: infancy and the preschool years. In: Goodyer I, ed. Unipolar depression: a lifespan perspective. Oxford: Oxford University Press, 2003. Forehand R, Biggar H, Kotchick BA. Cumulative risk across family stressors: short- and long-term effects for adolescents. J Abnormal Child Psychol 1998;26:119–28. Johnson MO, Lobo ML. Mother-child interaction in the presence of maternal HIV infection. JANAC: Journal of the Association of Nurses in AIDS Care 2001;12:40–51. 40 Shonkoff JP, Meisels SJ, eds. Handbook of early childhood intervention, 2nd edn. New York: Cambridge University Press, 2000. 41 Hunter S, Williamson J. Children on the brink: strategies to support children affected by HIV/ AIDS. Arlington, VA: USAID, 1997. 42 Richter L, Manegold J, Pather R. Family and community interventions to support children affected by HIV/AIDS. Pretoria: Human Sciences Research Council, 2004. 43 Foster G. Responses to HIV/AIDS by faith based organisations. World Conference of Religions for Peace and UNICEF. International Conference on AIDS and STIs in Africa, 21–26 September, 2003. 44 Brown GW, Harris T. Social origins of depression: a study of psychiatric disorder in women. London: Tavistock, 1978. 45 Save the Children. Children affected by HIV/AIDS in South Africa: a rapid appraisal of priorities, policies and practices. Save the Children (UK), South Africa Programme, July, 2003. Clinical Evidence—Call for contributors Clinical Evidence is a regularly updated evidence-based journal available worldwide both as a paper version and on the internet. Clinical Evidence needs to recruit a number of new contributors. Contributors are healthcare professionals or epidemiologists with experience in evidence-based medicine and the ability to write in a concise and structured way. Areas for which we are currently seeking authors: N N N N Child health: nocturnal enuresis Eye disorders: bacterial conjunctivitis Male health: prostate cancer (metastatic) Women’s health: pre-menstrual syndrome; pyelonephritis in non-pregnant women However, we are always looking for others, so do not let this list discourage you. Being a contributor involves: N N N N N Selecting from a validated, screened search (performed by in-house Information Specialists) epidemiologically sound studies for inclusion. N To expand the topic to include a new question about once every 12–18 months. Documenting your decisions about which studies to include on an inclusion and exclusion form, which we keep on file. Writing the text to a highly structured template (about 1500–3000 words), using evidence from the final studies chosen, within 8–10 weeks of receiving the literature search. Working with Clinical Evidence editors to ensure that the final text meets epidemiological and style standards. Updating the text every six months using any new, sound evidence that becomes available. The Clinical Evidence in-house team will conduct the searches for contributors; your task is simply to filter out high quality studies and incorporate them in the existing text. 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