- Email: [email protected]
Social consequences of antiretroviral therapy: preparing for the unexpected futures of HIV-positive children
Viewpoint
Social consequences of antiretroviral therapy: preparing for the unexpected futures of HIV-positive children Gretchen J Domek
In its 25-year history, HIV/AIDS has proved to be a complex and changing epidemic. The patterns of infection have varied globally depending on the social and economic conditions of the country affected, with poverty having an integral role as the largest social determinant of HIV/AIDS. Moreover, with the advent of antiretroviral therapy (ART), the important transformation of the epidemic from a fatal to a chronic infection has varied, largely dependent on the economic capabilities of the different countries and individual patients. Those able to access and afford such expensive treatment have quickly seen their life expectancy and quality of life greatly improve, whereas those less fortunate have continued to have devastatingly high rates of morbidity and mortality. Although ART has remained elusive in many lowincome and middle-income countries, pressure from activist groups, government leaders, health officials, and international organisations has resulted in lower costs and increased accessibility of ART through the public and private sectors. Pharmaceutical companies have been forced to lower costs of antiretroviral drugs and allow for the distribution of cheaper generic versions, governments (such as Brazil) have taken an active role in the universal distribution of ART, and WHO and UNAIDS 3-by-5 initiative, which had targeted to treat 3 million people by the end of 2005 has expanded not only the availability of ART but also the infrastructure to deliver such health care. Although the distribution of antiretroviral drugs is still far from adequate, the campaign to increase access to such therapy has had important success.1 The result has been that ART is now becoming an affordable and accessible option for people with HIV in parts of the world that previously had no access to such therapy. Just over two decades since the first reported child with AIDS, over 2 million children worldwide are now estimated to be living with HIV/AIDS, most of whom live in sub-Saharan Africa.2 HIV-positive children are affected by the AIDS epidemic in many ways. They have to deal with their own mortality and uncertain future, they suffer trauma and grief as they watch their parents die, many lose siblings and other family members, most are stigmatised and discriminated against, and many live in poor households—with HIV often perpetuating the vicious cycle of poverty. Perinatally acquired HIV was originally viewed as an inevitably fatal illness with death in early childhood (although exceptions certainly existed), but advances in new therapies have dramatically changed this view.3–5 Where ART is accessible, most HIV-infected children now live past age 5 years, and many into young adulthood.6 www.thelancet.com Vol 367 April 22, 2006
As growing numbers of children in low-income and middle-income countries gain access to ART, and as HIV moves from a fatal to a chronic infection, new public health and social service challenges arise. Although this transition has been documented in adults,7,8 it has only recently been described in children,9–11 and rarely so in children from low-income and middle-income countries.12 The challenges facing an HIV-positive child in a lowincome or middle-income country can be very different from those faced by an HIV-positive child in a highincome country, and thus research from higher-income countries is not always culturally sensitive or practically applicable to many communities in Africa, where most HIV-positive children live. These differences mean that further research is needed in low-income and middle-income countries as HIV/AIDS becomes a chronic illness in a growing proportion of the world. Furthermore, although the unique effects of HIV/AIDS on orphaned children in Africa have been documented,13,14 there is a need for more research into the transformation ART has brought for HIV-positive children and adolescents in these communities. HIV-positive orphans have unique challenges not faced by uninfected children orphaned by AIDS, and these challenges should be further explored. The psychological, social, and economic consequences of ART should be considered as HIV-positive children in low-income and middle-income countries are being prepared for independence and a future they have only lately been able to expect. Four major areas of concern have developed in respect to HIV-positive children receiving ART. First, disclosing to a child that they have HIV has gained more importance. If a child was expected to die in his or her first few years of life, explaining to that child the reasons for infection and the mechanisms of transmission were not crucial discussions (and not plausible in infants). However, as children get older and particularly as they reach puberty, knowing why they are unwell and understanding the nature of the virus becomes crucially important. Young adults have to make decisions about romantic relationships, sexual activity, experimentation with drugs and alcohol, and planning for the future. For the HIVpositive adolescent, these choices can be made only with an accurate and appropriate understanding of their infection status and the nature of HIV. Social support and open communication are important in making such an understanding possible. Although the benefits of disclosure seem substantial,15–17 we need to assess the cross-cultural intricacies surrounding disclosure practices and how cultural norms might
Lancet 2006; 367: 1367–69 Harvard Medical School, Boston, MA 02115-5750, USA (G J Domek MPhil) gretchen_domek@hms. harvard.edu
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Viewpoint
complicate the discussion of HIV/AIDS in children. Disclosure is a crucial and multifaceted issue in HIVpositive children—an issue heavily intertwined with societal and cultural traditions and circumstances.18 Clinicians need to work with family members and caregivers to encourage appropriate disclosure practices that take place not as a single revelation but as a gradual and progressive discussion throughout the child’s life.17,19 This process should be culturally sensitive and tailored to the needs of each individual child in each specific community. Second, the psychological wellbeing of HIV-positive children is a growing area of concern. The emotional effects of coping with HIV infection are often severe. HIV-positive individuals (both adults and children) deal with much emotional pain and complex feelings of loneliness, guilt, anger, confusion, depression, and fear.6,20 HIV-positive children can have clinical anxiety and depression as a result of “recurrent and cumulative”9 losses. Such traumatic occurrences include dealing with the death of family members (from AIDS-related illnesses), living in poverty, violence, sexual abuse, and comprehending their own mortality. Again, before ART when HIV-positive children tended not to survive past early childhood, these issues were not the central focus of care. Instead, the focus for these children was on providing comfort in death and dying. With the indefinitely lengthened life expectancies of children on ART, however, the psychological wellbeing of the HIV-positive child should now be adequately engaged. Living with a life-threatening and stigmatising illness is difficult and creates great psychological distress that should be addressed as the HIV-positive child grows up. Although implementation of a mental-health programme is not always an easy or practical solution in many resource-poor countries, a community-based model of care has been successful in parts of Africa.21,22 Empowering community members, including teachers, religious leaders, and clinicians, with the skills to recognise and respond to children with AIDS-related emotional and behavioural difficulties can be a cost-effective and readily applicable solution. Additionally, some have argued that if childhood mental-health care could be integrated into the primary-health system (by educating primary-care workers, especially nurses, to recognise childhood psychological problems), mental-health services would be more readily accessible for traditionally underserved populations.23 Providing psychological community-based support does not need to be a necessarily costly endeavour, and these efforts should be explored further to address the psychological needs of HIV-positive children and adolescents. Third, education has become an important issue for HIV-positive children. Because HIV-positive children who receive ART are surviving longer, they often go on to attend school, raising new concerns for them (such as absenteeism for doctor appointments, disclosure of 1368
infection status to school officials, and stigmatisation from classmates and teachers).24 Increased attention to education and appropriate disclosure are important as HIV-positive children become healthy enough to go to school. Especially in low-income and middle-income countries, these children now need access to schools, and the public-education system needs increased funding to handle the growing numbers of students. Teachers and school staff have to be prepared to work with HIV-positive children, and efforts should be undertaken to eliminate the stigmatisation of HIV-positive students. With the underlying determinant of HIV/AIDS often being poverty, regions afflicted by AIDS typically had scarce resources even before the epidemic began. Increasing funding to schools is therefore not a simple solution in resource-poor communities. However, educational support and alleviation of poverty should be seen as “an integral part of the global response to the HIV/AIDS catastrophe in sub-Saharan Africa”13 if we are to have any success in ending the worldwide presence of this devastating epidemic. Finally, attention should be paid to children growing up in the confined environment of an AIDS hospice or children’s home. Countries such as South Africa, where there are many orphans, have seen the emergence of HIV/AIDS hospices to care for ill and dying HIV-positive children. As these children have gained access to ART, such hospices have recently found themselves changing to the role of a children’s home raising large numbers of fairly healthy HIV-positive children. Now that effective drugs are increasingly available, many patients arrive at a hospice near death and are nursed back to a more-or-less healthy life on ART. The transition from inpatient to outpatient hospital services has been well documented in adults,25,26 and the shift in the functioning of AIDS children’s hospices to children’s homes, especially in low-income and middleincome countries, should now be assessed.18,27 The eventual prospect of deinstitutionalisation has to be considered as these children reach young adulthood. Additionally, efforts should be made to keep children out of institutions—as this is costly and not an ideal environment in which to raise children.13,28 Instead, community-based programmes for orphan care should be made the main option by enabling extended families and communities to care for orphaned and vulnerable children.29,30 The goal of these community-based programmes is to provide cost-effective and sustainable care at the community level by assessing and providing necessary material need, psychological support, homebased care,31 access to social grants, and incomegenerating activities. By providing these services, a community increases the capacities of extended families and community members to meet their own needs and provide the necessary care for HIV-positive children on ART. There is a growing need to address the institutional care given to HIV-positive children and the available www.thelancet.com Vol 367 April 22, 2006
Viewpoint
community-based care programme alternatives, especially as rising numbers of children gain access to ART and begin to live longer and healthier lives. Although access to ART for children around the world is important for their medical prognosis and life expectancy, these drugs also pose specific social consequences that should be addressed. The present situation of children growing up with HIV has major implications for social-service programmes, health-care decisions, and resource allocations. The AIDS epidemic cannot be disentangled from its greatest social determinant of poverty. Expanding access to ART should be balanced with efforts to redress the inequalities that so often underlie factors in HIV infection. Provision of ART should be accompanied by various medical, psychological, educational, and social services. The need for these services will only continue to grow as more and more HIV-positive children in low-income and middle-income countries are provided with such treatment. These children should now have access to information about their disease, psychological help to promote their emotional wellbeing, education and the opportunity to attend school, and preparation for an independent and economically productive future.
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Conflict of interest statement I declare that I have no conflict of interest. References 1 Piot P, Feachem RG, Lee JW, Wolfensohn JD. A global response to AIDS: lessons learned, next steps. Science 2004; 304: 1909–10. 2 UNAIDS. AIDS epidemic update: December 2005. Geneva: Joint UN programme on HIV/AIDS, 2005. 3 Gortmaker SL, Hughes M, Cervia J, et al. Effect of combination therapy including protease inhibitors on mortality among children and adolescents infected with HIV-1. N Engl J Med 2001; 345: 1522–28. 4 Matida LH, Marcopito LF, Succi RC, et al. Improving survival among Brazilian children with perinatally-acquired AIDS. Braz J Infect Dis 2004; 8: 419–23. 5 Puthanakit T, Oberdorfer A, Akarathum N, et al. Efficacy of highly active antiretroviral therapy in HIV-infected children participating in Thailand’s national access to antiretroviral program. Clin Infect Dis 2005; 41: 100–07. 6 Brown LK, Lourie KL, Pao M. Children and adolescents living with HIV and AIDS: a review. J Child Psychol Psychiatry 2000; 41: 81–96. 7 Selwyn PA, Arnold R. From fate to tragedy: the changing meanings of life, death, and AIDS. Ann Intern Med 1998; 129: 899–902. 8 Sowell RL, Phillips KD, Grier J. Restructuring life to face the future: the perspective of men after a positive response to protease inhibitor therapy. AIDS Patient Care STDS 1998; 12: 33–42. 9 Battles HB, Wiener LS. From adolescence through young adulthood: psychosocial adjustment associated with long-term survival of HIV. J Adolesc Health 2002; 30: 161–68. 10 Ledlie SW. The psychosocial issues of children with perinatally acquired HIV disease becoming adolescents: a growing challenge for providers. AIDS Patient Care STDS 2001; 15: 231– 36. 11 Mialky E, Vagnoni J, Rutstein R. School-age children with perinatally acquired HIV infection: medical and psychosocial issues in a Philadelphia cohort. AIDS Patient Care STDS 2001; 15: 575–79.
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Abadía -Barrero CE, Castro A. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med 2006: 62: 1219–28. Shetty AK, Powell G. Children orphaned by AIDS: a global perspective. Semin Pediatr Infect Dis 2003; 14: 25–31. Atwine B, Cantor-Graae E, Bajunirwe F. Psychological distress among AIDS orphans in rural Uganda. Soc Sci Med 2005; 61: 555–64. American Academy of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999; 103: 164–66. Gerson AC, Joyner M, Fosarelli P, et al. Disclosure of HIV diagnosis to children: when, where, why, and how. J Pediatr Health Care 2001; 15: 161–67. Abadía-Barrero CE, LaRusso MD. The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil. AIDS Patient Care STDS 2006; 20: 36–43. Domek GJ. Growing up with AIDS in a South African children’s home: an anthropological perspective on confinement and disclosure. MPhil Dissertation, University of Oxford Institute of Social and Cultural Anthropology, 2005. Lee CL, Johann-Liang R. Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers. AIDS Patient Care STDS 1999; 13: 41–45. Ruiz P. Living and dying with HIV/AIDS: a psychosocial perspective. Am J Psychiatry 2000; 157: 110–13. UNAIDS. Investing in our future: psychosocial support for children affected by HIV/AIDS: a case study of Zimbabwe and Tanzania. Geneva: UNAIDS, 2001. Brazarsh J, Community Information and Inspiration Team. The journey of life: a community workshop to support children. Bulawayo: The Regional Psychosocial Support Initiative For Children Affected by HIV/AIDS, 2004. Pillay AL, Lockhat MR. Developing community mental health services for children in South Africa. Soc Sci Med 1997; 45: 1493–501. Cohen J, Reddington C, Jacobs D, et al, the Massachusetts Working Group on Surveillance of HIV in Children, Massachusetts Department of Public Health, the Centers for Disease Control and Prevention. School-related issues among HIV-infected children. Pediatrics 1999; 100: 8–12. Gebo KA, Chaisson RE, Folkemer JG, Bartlett JG, Moore RD. Costs of HIV medical care in the era of highly active antiretroviral therapy. AIDS 1999; 13: 963–69. Tramarin A, Postma MJ, Gerzeli S, Campostrini S, Starace F. The clinical and economic efficacy of HAART: a shift from inpatient medical to outpatient pharmaceutical care for HIV/AIDS in Northeastern Italy. AIDS Care 2004; 16: 213–18. Abadía-Barrero CE. Children living with HIV and support homes in São Paulo: culture, experiences and housing context. Interface Comunic, Saúde, Educ 2002; 6: 55–70. Loening-Voysey H, Wilson T. Approaches to caring for children orphaned by AIDS and other vulnerable children: essential elements for a quality service. Report prepared for the United Nations Children’s Fund. Bergvlei: Institute for Urban Primary Health Care, 2001. Drew RS, Makufa C, Foster G. Strategies for providing care and support to children orphaned by AIDS. AIDS Care 1998; 10 (suppl): S9–16. Foster G, Makufa C. Supporting children in need through a community-based orphan visiting programme. AIDS Care 1996; 8: 389–404. O’Hare BAM, Venables J, Nalubeg JF, Nakakeeto M, Kibirige M, Southall DP. Home-based care for orphaned children infected with HIV/AIDS in Uganda. AIDS Care 2005; 17: 443–50.
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Social consequences of antiretroviral therapy: preparing for the unexpected futures of HIV-positive children Gretchen J Domek
In its 25-year history, HIV/AIDS has proved to be a complex and changing epidemic. The patterns of infection have varied globally depending on the social and economic conditions of the country affected, with poverty having an integral role as the largest social determinant of HIV/AIDS. Moreover, with the advent of antiretroviral therapy (ART), the important transformation of the epidemic from a fatal to a chronic infection has varied, largely dependent on the economic capabilities of the different countries and individual patients. Those able to access and afford such expensive treatment have quickly seen their life expectancy and quality of life greatly improve, whereas those less fortunate have continued to have devastatingly high rates of morbidity and mortality. Although ART has remained elusive in many lowincome and middle-income countries, pressure from activist groups, government leaders, health officials, and international organisations has resulted in lower costs and increased accessibility of ART through the public and private sectors. Pharmaceutical companies have been forced to lower costs of antiretroviral drugs and allow for the distribution of cheaper generic versions, governments (such as Brazil) have taken an active role in the universal distribution of ART, and WHO and UNAIDS 3-by-5 initiative, which had targeted to treat 3 million people by the end of 2005 has expanded not only the availability of ART but also the infrastructure to deliver such health care. Although the distribution of antiretroviral drugs is still far from adequate, the campaign to increase access to such therapy has had important success.1 The result has been that ART is now becoming an affordable and accessible option for people with HIV in parts of the world that previously had no access to such therapy. Just over two decades since the first reported child with AIDS, over 2 million children worldwide are now estimated to be living with HIV/AIDS, most of whom live in sub-Saharan Africa.2 HIV-positive children are affected by the AIDS epidemic in many ways. They have to deal with their own mortality and uncertain future, they suffer trauma and grief as they watch their parents die, many lose siblings and other family members, most are stigmatised and discriminated against, and many live in poor households—with HIV often perpetuating the vicious cycle of poverty. Perinatally acquired HIV was originally viewed as an inevitably fatal illness with death in early childhood (although exceptions certainly existed), but advances in new therapies have dramatically changed this view.3–5 Where ART is accessible, most HIV-infected children now live past age 5 years, and many into young adulthood.6 www.thelancet.com Vol 367 April 22, 2006
As growing numbers of children in low-income and middle-income countries gain access to ART, and as HIV moves from a fatal to a chronic infection, new public health and social service challenges arise. Although this transition has been documented in adults,7,8 it has only recently been described in children,9–11 and rarely so in children from low-income and middle-income countries.12 The challenges facing an HIV-positive child in a lowincome or middle-income country can be very different from those faced by an HIV-positive child in a highincome country, and thus research from higher-income countries is not always culturally sensitive or practically applicable to many communities in Africa, where most HIV-positive children live. These differences mean that further research is needed in low-income and middle-income countries as HIV/AIDS becomes a chronic illness in a growing proportion of the world. Furthermore, although the unique effects of HIV/AIDS on orphaned children in Africa have been documented,13,14 there is a need for more research into the transformation ART has brought for HIV-positive children and adolescents in these communities. HIV-positive orphans have unique challenges not faced by uninfected children orphaned by AIDS, and these challenges should be further explored. The psychological, social, and economic consequences of ART should be considered as HIV-positive children in low-income and middle-income countries are being prepared for independence and a future they have only lately been able to expect. Four major areas of concern have developed in respect to HIV-positive children receiving ART. First, disclosing to a child that they have HIV has gained more importance. If a child was expected to die in his or her first few years of life, explaining to that child the reasons for infection and the mechanisms of transmission were not crucial discussions (and not plausible in infants). However, as children get older and particularly as they reach puberty, knowing why they are unwell and understanding the nature of the virus becomes crucially important. Young adults have to make decisions about romantic relationships, sexual activity, experimentation with drugs and alcohol, and planning for the future. For the HIVpositive adolescent, these choices can be made only with an accurate and appropriate understanding of their infection status and the nature of HIV. Social support and open communication are important in making such an understanding possible. Although the benefits of disclosure seem substantial,15–17 we need to assess the cross-cultural intricacies surrounding disclosure practices and how cultural norms might
Lancet 2006; 367: 1367–69 Harvard Medical School, Boston, MA 02115-5750, USA (G J Domek MPhil) gretchen_domek@hms. harvard.edu
1367
Viewpoint
complicate the discussion of HIV/AIDS in children. Disclosure is a crucial and multifaceted issue in HIVpositive children—an issue heavily intertwined with societal and cultural traditions and circumstances.18 Clinicians need to work with family members and caregivers to encourage appropriate disclosure practices that take place not as a single revelation but as a gradual and progressive discussion throughout the child’s life.17,19 This process should be culturally sensitive and tailored to the needs of each individual child in each specific community. Second, the psychological wellbeing of HIV-positive children is a growing area of concern. The emotional effects of coping with HIV infection are often severe. HIV-positive individuals (both adults and children) deal with much emotional pain and complex feelings of loneliness, guilt, anger, confusion, depression, and fear.6,20 HIV-positive children can have clinical anxiety and depression as a result of “recurrent and cumulative”9 losses. Such traumatic occurrences include dealing with the death of family members (from AIDS-related illnesses), living in poverty, violence, sexual abuse, and comprehending their own mortality. Again, before ART when HIV-positive children tended not to survive past early childhood, these issues were not the central focus of care. Instead, the focus for these children was on providing comfort in death and dying. With the indefinitely lengthened life expectancies of children on ART, however, the psychological wellbeing of the HIV-positive child should now be adequately engaged. Living with a life-threatening and stigmatising illness is difficult and creates great psychological distress that should be addressed as the HIV-positive child grows up. Although implementation of a mental-health programme is not always an easy or practical solution in many resource-poor countries, a community-based model of care has been successful in parts of Africa.21,22 Empowering community members, including teachers, religious leaders, and clinicians, with the skills to recognise and respond to children with AIDS-related emotional and behavioural difficulties can be a cost-effective and readily applicable solution. Additionally, some have argued that if childhood mental-health care could be integrated into the primary-health system (by educating primary-care workers, especially nurses, to recognise childhood psychological problems), mental-health services would be more readily accessible for traditionally underserved populations.23 Providing psychological community-based support does not need to be a necessarily costly endeavour, and these efforts should be explored further to address the psychological needs of HIV-positive children and adolescents. Third, education has become an important issue for HIV-positive children. Because HIV-positive children who receive ART are surviving longer, they often go on to attend school, raising new concerns for them (such as absenteeism for doctor appointments, disclosure of 1368
infection status to school officials, and stigmatisation from classmates and teachers).24 Increased attention to education and appropriate disclosure are important as HIV-positive children become healthy enough to go to school. Especially in low-income and middle-income countries, these children now need access to schools, and the public-education system needs increased funding to handle the growing numbers of students. Teachers and school staff have to be prepared to work with HIV-positive children, and efforts should be undertaken to eliminate the stigmatisation of HIV-positive students. With the underlying determinant of HIV/AIDS often being poverty, regions afflicted by AIDS typically had scarce resources even before the epidemic began. Increasing funding to schools is therefore not a simple solution in resource-poor communities. However, educational support and alleviation of poverty should be seen as “an integral part of the global response to the HIV/AIDS catastrophe in sub-Saharan Africa”13 if we are to have any success in ending the worldwide presence of this devastating epidemic. Finally, attention should be paid to children growing up in the confined environment of an AIDS hospice or children’s home. Countries such as South Africa, where there are many orphans, have seen the emergence of HIV/AIDS hospices to care for ill and dying HIV-positive children. As these children have gained access to ART, such hospices have recently found themselves changing to the role of a children’s home raising large numbers of fairly healthy HIV-positive children. Now that effective drugs are increasingly available, many patients arrive at a hospice near death and are nursed back to a more-or-less healthy life on ART. The transition from inpatient to outpatient hospital services has been well documented in adults,25,26 and the shift in the functioning of AIDS children’s hospices to children’s homes, especially in low-income and middleincome countries, should now be assessed.18,27 The eventual prospect of deinstitutionalisation has to be considered as these children reach young adulthood. Additionally, efforts should be made to keep children out of institutions—as this is costly and not an ideal environment in which to raise children.13,28 Instead, community-based programmes for orphan care should be made the main option by enabling extended families and communities to care for orphaned and vulnerable children.29,30 The goal of these community-based programmes is to provide cost-effective and sustainable care at the community level by assessing and providing necessary material need, psychological support, homebased care,31 access to social grants, and incomegenerating activities. By providing these services, a community increases the capacities of extended families and community members to meet their own needs and provide the necessary care for HIV-positive children on ART. There is a growing need to address the institutional care given to HIV-positive children and the available www.thelancet.com Vol 367 April 22, 2006
Viewpoint
community-based care programme alternatives, especially as rising numbers of children gain access to ART and begin to live longer and healthier lives. Although access to ART for children around the world is important for their medical prognosis and life expectancy, these drugs also pose specific social consequences that should be addressed. The present situation of children growing up with HIV has major implications for social-service programmes, health-care decisions, and resource allocations. The AIDS epidemic cannot be disentangled from its greatest social determinant of poverty. Expanding access to ART should be balanced with efforts to redress the inequalities that so often underlie factors in HIV infection. Provision of ART should be accompanied by various medical, psychological, educational, and social services. The need for these services will only continue to grow as more and more HIV-positive children in low-income and middle-income countries are provided with such treatment. These children should now have access to information about their disease, psychological help to promote their emotional wellbeing, education and the opportunity to attend school, and preparation for an independent and economically productive future.
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Conflict of interest statement I declare that I have no conflict of interest. References 1 Piot P, Feachem RG, Lee JW, Wolfensohn JD. A global response to AIDS: lessons learned, next steps. Science 2004; 304: 1909–10. 2 UNAIDS. AIDS epidemic update: December 2005. Geneva: Joint UN programme on HIV/AIDS, 2005. 3 Gortmaker SL, Hughes M, Cervia J, et al. Effect of combination therapy including protease inhibitors on mortality among children and adolescents infected with HIV-1. N Engl J Med 2001; 345: 1522–28. 4 Matida LH, Marcopito LF, Succi RC, et al. Improving survival among Brazilian children with perinatally-acquired AIDS. Braz J Infect Dis 2004; 8: 419–23. 5 Puthanakit T, Oberdorfer A, Akarathum N, et al. Efficacy of highly active antiretroviral therapy in HIV-infected children participating in Thailand’s national access to antiretroviral program. Clin Infect Dis 2005; 41: 100–07. 6 Brown LK, Lourie KL, Pao M. Children and adolescents living with HIV and AIDS: a review. J Child Psychol Psychiatry 2000; 41: 81–96. 7 Selwyn PA, Arnold R. From fate to tragedy: the changing meanings of life, death, and AIDS. Ann Intern Med 1998; 129: 899–902. 8 Sowell RL, Phillips KD, Grier J. Restructuring life to face the future: the perspective of men after a positive response to protease inhibitor therapy. AIDS Patient Care STDS 1998; 12: 33–42. 9 Battles HB, Wiener LS. From adolescence through young adulthood: psychosocial adjustment associated with long-term survival of HIV. J Adolesc Health 2002; 30: 161–68. 10 Ledlie SW. The psychosocial issues of children with perinatally acquired HIV disease becoming adolescents: a growing challenge for providers. AIDS Patient Care STDS 2001; 15: 231– 36. 11 Mialky E, Vagnoni J, Rutstein R. School-age children with perinatally acquired HIV infection: medical and psychosocial issues in a Philadelphia cohort. AIDS Patient Care STDS 2001; 15: 575–79.
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Abadía -Barrero CE, Castro A. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med 2006: 62: 1219–28. Shetty AK, Powell G. Children orphaned by AIDS: a global perspective. Semin Pediatr Infect Dis 2003; 14: 25–31. Atwine B, Cantor-Graae E, Bajunirwe F. Psychological distress among AIDS orphans in rural Uganda. Soc Sci Med 2005; 61: 555–64. American Academy of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999; 103: 164–66. Gerson AC, Joyner M, Fosarelli P, et al. Disclosure of HIV diagnosis to children: when, where, why, and how. J Pediatr Health Care 2001; 15: 161–67. Abadía-Barrero CE, LaRusso MD. The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in São Paulo, Brazil. AIDS Patient Care STDS 2006; 20: 36–43. Domek GJ. Growing up with AIDS in a South African children’s home: an anthropological perspective on confinement and disclosure. MPhil Dissertation, University of Oxford Institute of Social and Cultural Anthropology, 2005. Lee CL, Johann-Liang R. Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers. AIDS Patient Care STDS 1999; 13: 41–45. Ruiz P. Living and dying with HIV/AIDS: a psychosocial perspective. Am J Psychiatry 2000; 157: 110–13. UNAIDS. Investing in our future: psychosocial support for children affected by HIV/AIDS: a case study of Zimbabwe and Tanzania. Geneva: UNAIDS, 2001. Brazarsh J, Community Information and Inspiration Team. The journey of life: a community workshop to support children. Bulawayo: The Regional Psychosocial Support Initiative For Children Affected by HIV/AIDS, 2004. Pillay AL, Lockhat MR. Developing community mental health services for children in South Africa. Soc Sci Med 1997; 45: 1493–501. Cohen J, Reddington C, Jacobs D, et al, the Massachusetts Working Group on Surveillance of HIV in Children, Massachusetts Department of Public Health, the Centers for Disease Control and Prevention. School-related issues among HIV-infected children. Pediatrics 1999; 100: 8–12. Gebo KA, Chaisson RE, Folkemer JG, Bartlett JG, Moore RD. Costs of HIV medical care in the era of highly active antiretroviral therapy. AIDS 1999; 13: 963–69. Tramarin A, Postma MJ, Gerzeli S, Campostrini S, Starace F. The clinical and economic efficacy of HAART: a shift from inpatient medical to outpatient pharmaceutical care for HIV/AIDS in Northeastern Italy. AIDS Care 2004; 16: 213–18. Abadía-Barrero CE. Children living with HIV and support homes in São Paulo: culture, experiences and housing context. Interface Comunic, Saúde, Educ 2002; 6: 55–70. Loening-Voysey H, Wilson T. Approaches to caring for children orphaned by AIDS and other vulnerable children: essential elements for a quality service. Report prepared for the United Nations Children’s Fund. Bergvlei: Institute for Urban Primary Health Care, 2001. Drew RS, Makufa C, Foster G. Strategies for providing care and support to children orphaned by AIDS. AIDS Care 1998; 10 (suppl): S9–16. Foster G, Makufa C. Supporting children in need through a community-based orphan visiting programme. AIDS Care 1996; 8: 389–404. O’Hare BAM, Venables J, Nalubeg JF, Nakakeeto M, Kibirige M, Southall DP. Home-based care for orphaned children infected with HIV/AIDS in Uganda. AIDS Care 2005; 17: 443–50.
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