About the research
This resource draws on media research conducted by the Children's Institute and the Centre for Social Science Research (both at the University of Cape Town), the Media Monitoring Project, and the HIV/AIDS and the Media Project, managed by the Journalism Programme and the Perinatal HIV Research Unit (at the University of the Witwatersrand). For more detailed analysis, copies of related research publications are available from the Children's Institute, the Media Monitoring Project, and the HIV/AIDS and the Media Project (see Section 5 of this report for contact details).
Acknowledgements
Thank you to all those who commented on this resource during its development:
Alan Finlay — Open Research
Andrew Boulle — Infectious Diseases Epidemiology Unit, University of Cape Town
Caroline Hooper-Box — Sunday Independent
Helen Struthers — Perinatal HIV Research Unit
James Nuttall — Red Cross Hospital
Jo Stein — Lung Institute, University of Cape Town
Nicola Spurr — Independent researcher
Shireen Usdin — Soul City
Sonja Giese — Children's Institute
Sue Goldstein — Soul Buddyz
Sue Valentine — Open Society Foundation
This project was funded by the Bernard van Leer Foundation
This resource was compiled by the Children's Institute, the Centre for Social Science Research, the Media Monitoring Project, and the HIV/AIDS and the Media Project. Written by William Bird, Rachel Bray, Gemma Harries, Helen Meintjes, Jo Monson and Natalie Ridgard. © 2005 MMP, CI, CSSR, Wits
The information in this booklet can be used, shared, and reproduced with the full acknowledgement of the authors.
The media shapes public attitudes and actions towards children affected by HIV/AIDS. This makes it important for journalists and editors to be conscious of the perspectives and judgements that are implicit in their reporting. This resource provides reference information to assist journalists in reporting on children in the context of HIV/AIDS.
Part 1. Presents recent research and thinking around the ways in which children are affected by HIV/AIDS, including being orphaned.
Part 2. Outlines some of the key issues in responding to children affected by HIV/AIDS, including clinical interventions, (such as prevention of mother-to-child transmission and antiretroviral treatment), and social support for affected communities.
Part 3. Presents some misleading messages that the media perpetuates in its coverage. It challenges journalists to contextualise stories and to not compromise children's well being through stereotyping.
Part 4. Provides journalists with five guiding principles for reporting on children and HIV/AIDS, including issues of confidentiality and children's right to participate in matters that concern them.
Part 5. Provides a detailed resource list, including organisations that conduct research into children affected by the epidemic, those which can provide up-to-date statistics, and organisations that work directly with children and their families.
Part 6. Provides a list of sources used in this resource, and numbered in the text using superscript. It also provides a list of media monitored during the research.
Part 1 highlights the many ways children are affected by HIV/AIDS, and challenges the predominant focus in the media on "AIDS orphans". Some of the statistics and stereotypes commonly associated with "AIDS orphans" are contextualised within the range of children rendered vulnerable by the combined impact of HIV/AIDS and poverty.
Children are affected by HIV/AIDS in a number of different ways.
In terms of section 28 of the South African Constitution, a child is defined as a person younger than 18 years old.
The illness or death of someone who provides financial or other support to children and their households (whether or not that person lives with the family). As increasing numbers of people depend on limited or decreasing income and resources, children are at greater risk; Definition: OVC
As HIV/AIDS affects children in a variety of ways, the phrase "orphans and vulnerable children" (OVC) was coined. This phrase is an attempt to recognise that it is not only children orphaned by HIV/AIDS who are vulnerable as a result of the epidemic. The term OVC remains problematic, as it is frequently used as a replacement term for "AIDS orphans", rather than as a reference to the much broader range of children (including orphans) who are affected by HIV/AIDS21.
In South Africa there are more than 3.4 million children under the age of 18 who have lost either a mother or a father, or both parents.
Almost 70% of all orphans in the GHS 2004 were "paternal orphans": children whose fathers had died but whose mothers were alive.
AIDS is not the only cause of orphanhood
It is estimated that 62% of all maternal orphans have lost their mothers due to HIV/AIDS14. The proportion of children who have lost their father to HIV/AIDS will be lower, because of lower AIDS mortality rates in men. A large proportion of children lose their parents to violence, motor vehicle accidents, and illnesses other than HIV. This makes it difficult to identify the numbers of children orphaned by AIDS, rather than by other causes, and mistakes are easily made by those who give estimates of "AIDS orphan" numbers.
Most children orphaned by HIV/AIDS are not HIV-positive
HIV is not transmitted to most children born to HIV-positive parents. Most children orphaned by AIDS are born many years before their parents die. At the time of their birth, their parents are either not yet infected with HIV, or are in the early stages of HIV, and so at a low risk of transmitting the virus from mother to child.
Orphans in South Africa, June 2004 (GHS 2004).
Most orphans are not very young children
According to the 2004 General Household Survey, 70% of orphans are 9 years and older.
Orphan statistics can be confusing:
The term "orphan" is frequently applied differently by modellers, statisticians, and researchers. Some statistics refer to children up to the age of 15 rather than 18. Sometimes when the term "maternal orphan" is used, it applies to children whose mothers have died, but whose fathers are alive. At other times, it applies to all children whose mothers have died, i.e., the figure might include children whose fathers have also died. The same frequently applies to the term "paternal orphans".
Few children live in child-headed households
The General Household Survey data suggests that 0.6% of children (orphaned or otherwise) in South Africa were living in child-headed households in June 2004. This is equal to roughly 107000 children6. This figure should, however, be treated with caution as child-headed households formed only a small subsample of the survey.
Research shows that child-headed households are frequently temporary households10, 21. In other words, many child-headed households may exist for a limited period after the death of an adult, prior to other arrangements being made to care for the children. These include adults moving in or the children moving to another household to live with relatives.
In other words, the vast majority of children who have been orphaned in South Africa are growing up in households where adults are also resident. While this does not necessarily guarantee the children a supportive living environment, it provides them with adult socialisation and the potential for adult care and support.
Existing evidence about whether orphans are at special risk is contradictory
Studies that compare the experiences of children who have lost one or both parents to children whose parents are alive provide inconsistent results. There is a range of contradictory evidence as to whether the following factors are in fact adversely affected by the death of one or both parent21 :
Considering the existing evidence, predictions about increasing numbers of orphans resulting in "hordes of criminal children" are unlikely to be fulfilled3.
Many children in South Africa share experiences often associated specifically with orphans21, such as:
Using national survey data from 2004, it was estimated that 65% of South Africa's children are living below the poverty line, as defined by the South African government for its cash grant poverty alleviation programme. In other words, in terms of the government's own definition, two-thirds of South Africa's children are living in families that are so poor that they cannot afford to fulfil their children's basic needs.4With children affected in a multitude of ways, Part 2 presents just ten of the many critical issues at stake in a national response to children experiencing the impact of the epidemic. Key issues related to the implementation of clinical interventions to prevent and treat HIV in children are presented first. Urgent attention is also called to the delay in formalising programmes and policies, and the appropriateness of some existing responses, such as the building of more orphanages, the reliance on volunteers, and the ways government grants are being implemented. Lastly, the limitations of media prevention campaigns and poor health services for youth are noted.
Important policy and programme debates are being held within government and civil society about the best ways to assist children in the context of the HIV/AIDS epidemic. Studies on the impact of different service and support responses on children's lives are underway. Such research plays a crucial role in identifying appropriate interventions for children (see Part 5 for a list of research organisations to contact for updated information).
What we already know is that there is no single solution. A range of complementary strategies is needed to address the impact of the epidemic, some of which focus directly on children, while others focus on families and communities.
The media can play a vital role in ensuring appropriate responses to HIV/AIDS. How? By engaging in the debates, tracking implementation, and highlighting areas where government does not live up to its promises.
Prevention of vertical HIV infection of children is simple, readily achievable in the South African context, and is much more cost-effective than treating infected children. It is crucial that attention be paid to making PMTCT programmes effective.
Public sector PMTCT programmes in South Africa currently involve:
With this intervention, transmission from mother to child can be reduced by about 50% to between 13% and 15%.
Slightly more complex PMTCT regimens, which use more than one ARV drug, do exist. These could bring vertical transmission of HIV down to between 2% and 5%7. Unfortunately, these are not currently available in public sector clinics in South Africa, with the exception of the Western Cape. There is minimal reporting in the South African media on PMTCT.
What is vertical / horizontal transmission of HIV?
Vertical transmission of HIV refers to when a mother transmits HIV to her child while in-utero, during birth, or through breast-feeding. Horizontal transmission of HIV refers to transmission through sex, contaminated needles, etc.
A key component of PMTCT is the follow-up and testing of children. Most provinces use antibody tests, which only confirm positive diagnoses when a child is 18 months old. More expensive tests (PCR tests) are available and effective from six weeks, but these are only used in the Western Cape.
There are many disadvantages to a late diagnosis of children's HIV status:
Although formula feeding removes the risk of post-natal transmission of HIV, there is concern that it could lead to an increase in diarrhoeal disease, due to contamination of bottles. There are, however, many areas where formula feeding can be safely promoted.
If women decide to breastfeed their infants, there is evidence to suggest that exclusive breastfeeding is safer than mixed feeding.
HIV-positive women are, therefore, advised to bottle-feed or to breastfeed exclusively for four months and then abruptly wean their babies. Many complex factors need to be taken into account before one or the other can be recommended. Context is key and the following need to be taken into consideration:
The number of children in need of ART far exceeds the current availability of the drugs. In early 2005, estimates based on the ASSA model suggest that less than one in five children who were in need of ART were actually receiving the treatment1. Hopefully this proportion will change rapidly, as treatment is rolled out nationally. Some of the barriers to providing antiretrovirals to children include:
The child support grant (CSG) is a cash grant provided by the government to caregivers of poor children under the age of 14. In 2005, the grant is equal to R180 per month per eligible child, up to a maximum of six children. This means that there is no income support for poor children over the age of 14; an age at which children are especially prone to dropping out of school if there are insufficient resources to support them and their households.
It is well documented that HIV/AIDS can have a significant effect on household financial resources, as money is diverted to health care and funerals, and income is lost when breadwinners are too ill to work. In the context of HIV/AIDS, therefore, it is especially crucial that the government pay attention to providing adequate poverty relief.
Research undertaken in KwaZulu-Natal5 suggests that CSGs are making a difference to children (including those affected by HIV/AIDS) by increasing, for example, their chances of regular school attendance. While there is much discussion in the media about abuse of grants, there is no evidence that this is a widespread practice.
Children and families frequently experience difficulties in accessing the government services and support for which they are eligible4, 10.
The foster care system is a cornerstone of the child protection system, which is designed to assist children who have been abused and neglected.
However with encouragement from the South African government, increasing numbers of families that care for orphans are relying on foster care placement and FCGs as a means to access financial support. This approach on the part of the government is questionable for a number of reasons, including20:
The prevention of sexual transmission of HIV is especially challenging because it requires complex changes in behaviour and social norms. Media campaigns in partnership with the Department of Health, such as Khomanani, loveLife, and Soul City, specifically target the youth with prevention messages around safe sex, and try to encourage confidence, particularly amongst young women, around negotiating sexual practices.
Research has repeatedly documented children's and adolescents' negative experiences when attempting to access reproductive health-related services and support.
Their limitations include very high running costs, the fact that children are separated from their families and communities, and well- documented difficulties that older children experience when they leave the institutions.
There is evidence that this strategy can have negative consequences for orphans, and that it does not adequately respond to the much larger numbers of needy children who live in the same communities. Orphan recipients of aid can become exploited, while those who do not fit the definition "orphan" remain at huge risk10, 21.
Community-based care (in the form of home-based care services, community child-care forums, and others) plays a vital role in supporting children and families affected by HIV/AIDS. There is scope for further strengthening of community-based support through better use of existing institutions, such as schools.
However, the heavy reliance of many of these programmes on volunteer labour — usually of poor women — raises questions of appropriateness, equity, and sustainability10.
The Department of Social Development's orphans and vulnerable children (OVC) policy framework and the Children's Bill are two key pieces of policy and legislation that have not yet been implemented:
Once the second Bill has been passed, the two Bills will be merged into a single Children's Act. The Children's Act will replace the Child Care Act of 1983.
With the huge potential to impact on responses and policy debates, Part 3 uses recent research studies to describe some of the media's limitations in its representation of children and HIV/AIDS. Some of the misleading messages commonly perpetuated are listed and trends in the ways in which stories are reported are outlined.
"Scientists, researchers and welfare agencies warn that without 'determined and dramatic' intervention, the soaring AIDS deaths, particularly of young mothers, will turn our city streets into dangerous 'no go' areas. They paint a grim, nightmarish picture of bands of lawless children, armed to the teeth and rampaging for food and shelter; waging a war of survival against each other and society at large, much like a page from Lord of the Flies." (Independent on Saturday, 11/05/2002)
"A Cape Town-born banker . who gave up a successful financial career in London to help raise funds for AIDS orphans in South Africa." (The Star, 30/05/2002)
"There can be no more pathetic a group of children than the growing legion of AIDS orphans, who daily face a desperate fight for survival in a society which largely continues to close its collective eyes to their plight." (Daily News, 03/05/2003)
"Relatives abandoned them because they had the disease." (Daily News, 02/12/2002)
"Children who have been left to fend for themselves, having been forgotten by those responsible for them." (The Citizen, 02/05/2003)
"Helpless victims of a social and medical nightmare." (Sowetan Sunday World, 24/7/2002)
A recent study that addressed the content of articles published in the South African print media found that some reports convey misleading messages about children affected by HIV/AIDS19. These can, and should, be replaced by accurate information.
There are only two categories of children affected by HIV/AIDS: "AIDS orphans" and HIV-positive children;
Increasing numbers of "AIDS orphans" will result in gangs of uncivilised and criminal children, who threaten society, and put the South African public's safety at risk;Studies highlight a number of tendencies in media coverage of HIV/AIDS:
An assumption that readers are unaffected by HIV/AIDS prevails in the media. They are presented as "outsiders" to the relevant issues, except in coming to the rescue.While many media reports present facts, they risk distorting the overall picture by presenting only a particular set of facts. Often the context is not present in the articles, or the stories are too narrow in their focus.
The media have the potential to compound the vulnerability of children affected by HIV/AIDS:
Stereotypes and untruths can be unintentionally reinforced by a careless choice of words;The media have the power to inform and promote appropriate responses to the range of children affected by HIV/ AIDS. The media can and should:
Every little bit counts toward an appropriate response: it is the cumulative effect of stereotypical, partial, or inaccurate reporting that threatens South Africa's ability to respond effectively to children's needs. If the majority of reporting is sensitive and informed, there are huge potential benefits for children, families, and society.
Following up on the challenge for absolute rigour and sensitivity in reporting on children, Part 4 provides five guiding principles to both safe-guard children and enhance reporting.
Children are afforded special protection by a number of international conventions and national laws (see the Resources section for more information). Journalists have a responsibility to be constantly aware of the need to protect children and to enhance their rights, and in practice, adhere to the highest ethical principles. These are:
Below are five guiding principles for reporting on children affected by HIV/AIDS:
"The child's best interests are of paramount importance in every matter concerning the child"
(Section 28(2) of the South African Constitution).
All media coverage of children should be assessed to check that reports do not contribute to children's vulnerability and are in the best interests of the children concerned.
"In reporting on children, journalists must maintain the highest standards of ethical conduct, excellence, and sensitivity. In particular, children's rights to privacy and dignity should be afforded even greater protection"13.
This includes:
A child's HIV status must remain confidential, unless the child wants to reveal her/his status, and through informed consent, is made aware of the potential consequences. Even if the child's caregivers give consent, unless it is demonstrably in the best interests of the child, and unless the child him/herself consents, the child's HIV status should not be revealed. Great care needs to be exercised in preventing the indirect identification of a child through the naming or photographing of a child's school, home, place of care, or through naming the child and/or the child's caregivers or parents.
If in doubt, leave it out
Only in cases where there is an overwhelming and demonstrable public interest, should a child's HIV status be revealed.
Be mindful of the consequences of your story. The children whom you use as sources have to live with the story long after you have moved on23.
Where possible, journalists should give children the opportunity to express their views and opinions on HIV/AIDS and related matters. When working with children, children's ages and developmental stages need to be taken into account.
Child #1: I think this child is HIV-positive. He is going to die. If people don't understand his situation they may laugh at him [because he is HIV-positive], but when they know about HIV/AIDS they will give him support and love. He must be open so he can get help.
Child #2: You mean people who are HIV-positive should talk about it?
Child #1: I am not going to get support easily if I am not open about being HIV-positive. They need to be open so people can help them to cope with the stress.
Child #3: I don't like it. I think they shouldn't show the face. Other people will know now and laugh at him at school.
Child #1: I agree. Why did they decide to take this photo when he was taking the medicine? Why did they decide to take a photo that makes him look so bad? Why must they show this child with the tube in his nose and the medicine? He looks sick and very bad. I really don't like it. They should have taken the tube out and then taken the photo.
(Children commenting on a photograph published in a local newspaper; Empowering Children & the Media project, 2003)
For up-to-date statistics, estimates, and projections:
Children's Institute Children-Count Abantwana Babalulekile Project
+27 21 689 5404
www.childrencount.ci.org.za
Centre for Actuarial Research
University of Cape Town
+27 21 650 2475
www.commerce.uct.ac.za/care
For social, clinical, and legal research on children affected by HIV/AIDS and related interventions:
Children's Institute
University of Cape Town
+27 21 689 5404
www.uct.ac.za/depts/ci
Centre for Social Science Research
University of Cape Town
+27 21 650 4658
http://www.cssr.uct.ac.za
Africa Centre for Health and Population Studies
+27 35 550 7500
www.africacentre.org.za
Child, Youth, and Family Development Unit
Human Sciences Research Council
Pretoria: +27 12 302 2000
Cape Town: +27 21 466 8000
Durban: +27 31 242 5400
Port Elizabeth: +27 41 506 6700
www.hsrc.ac.za/research/programmes/CYFD/
Social Aspects of HIV/AIDS Unit
Human Sciences Research Council
Pretoria: +27 12 302 2000
Cape Town: +27 21 466 8000
Durban: +27 31 242 5400
Port Elizabeth: +27 41 506 6700
www.hsrc.ac.za/research/programmes/SAHA/
Health, Economics, and HIV/AIDS Research Division (HEARD)
University of KwaZulu-Natal
+27 31 260 2592
www.ukzn.ac.za/heard/
Centre for HIV/AIDS Networking (HIVAN)
University of KwaZulu-Natal
+27 31 260 3334
www.hivan.org.za
Centre for AIDS Development, Research, and Evaluation (CADRE)
Durban: +27 31 242 5413
Gauteng: +27 11 339 2611
Grahamstown: +27 46 603 8553
www.cadre.org.za
African Network for the Care of Children Affected by AIDS (ANECCA)
+27 21 658 5111
Community Law Centre Children's Rights Project
University of the Western Cape
+27 21 959 2950 / 959 3701
www.communitylawcentre.org.za
Harriet Shezi Children's HIV Clinic
University of the Witwatersrand
+27 11 933 9629/9630/9845
Perinatal HIV Research Unit
University of the Witwatersrand
+27 11 989 9700
www.phru.co.za
Red Cross Hospital: Infectious Diseases Unit
University of Cape Town
+27 21 658 5111
Children's Infectious Diseases Clinical Research Unit (KID-CRU)
Tygerberg Hospital
+27 21 938 4219
For information and support on reporting on children and HIV/AIDS:
Media Monitoring Project
+27 11 788 1278
www.mediamonitoring.org.za
HIV/AIDS and the Media Project
University of the Witwatersrand
+27 11 717 4086
www.journ-aids.org
Soul City and Soul Buddyz
Children's Rights and the Media
+27 11 643 5852
www.soulcity.org.za
For information on organisations that work directly with children and their families:
AIDS Consortium
+27 11 403 0265
www.aidsconsortium.org.za
Children's Rights Centre (CRC)
+27 31 307 6075
www.childrensrightscentre.co.za
ChildLine
Eastern Cape: +27 41 487 1997
Gauteng: +27 11 484 1070
KwaZulu-Natal: +27 31 312 0904
North West: +27 18 299 1940
www.childline.org.za
Children's HIV/AIDS Network (CHAiN)
+27 21 461 7348
Children in Distress Network (C I N D I)
+27 33 345 7994
www.cindi.org.za
South African Professional Society on the Abuse of Children (SAPSAC)
+27 12 804 5052
www.sapsac.org.za
South African Society for the Prevention of Child Abuse and Neglect (SASPCAN)
+27 11 339 5741
www.saspcan.org.za
National bodies:
National Children's Rights Committee
+27 11 339 1919
www.crin.org
Office on the Rights of the Child in the
Presidency
+27 21 464 2122 / 2100
www.info.gov.za/aboutgovt/contacts/min/presidency.htm
World Health Organisation
www.who.int
United Nations Convention on the Rights
of the Child
www.unhchr.ch/html/menu3/b/k2crc.htm
For specific South African laws:
Media Monitoring Project
www.mediamonitoring.org.za/ecm_2005/pdf/journos_handbook.pdf
For specific South African law updates:
www.pims.org.za
www.gcis.gov.za
1. Actuarial Society of South Africa. 2004. ASSA 2002 AIDS and Demographic Model. Available URL:
http://www.assa.org.za/default.asp?id=1000000050
2. Berry, L. and Guthrie. T. 2003. Rapid Assessment: The situation of children in South Africa. Cape Town: Children's Institute and Save the Children Sweden. Available URL: http://web.uct.ac.za/depts/ci/pubs/htmdocs/rapidass.htm
3. Bray, R. 2003. "Predicting the social consequences of orphanhood in South Africa". IN African Journal of AIDS Research 2(1): pp. 39-55.
4. Budlender, D., Rosa, S., and Hall, K. 2005. At all Costs? Applying the means test for the Child Support Grant. Cape Town: Children's Institute and Centre for Actuarial Research, University of Cape Town. Available URL: http://web.uct.ac.za/depts/ci/pubs/pdf/poverty/resrep/AtAllCosts.pdf
5. Case, A., Hosegood. V. and Lund. F. 2003 "Child support grant study findings". IN ChildrenFIRST 51: pp. 45-49.
6. Children's Institute. 2005. Children Count Abantwana Babalulekile. Available URL: http://www.childrencount.ci.org.za
7. Coetzee, D., Hildebrand. K, and Boulle. A. 2005. "Preventing mother-to-child HIV transmission in South Africa". IN Bulletin of the World Health Organisation 83(7): pp. 489-494. Available URL: http://www.who.int/bulletin/volumes/83/7/489.pdf
8. Dorrington, R. et al. 2004. The Demographic Impact of HIV and AIDS in South Africa: National Indicators for 2004. Cape Town: Joint publication by the Centre for Actuarial Research, the Burden of Disease Research Unit (Medical Research Council), and the Actuarial Society of South Africa. Available URL: http://www.mrc.ac.za/bod/demographic.pdf
9. Finlay, A. 2004. "Shaping the Conflict: Factors Affecting The Representation of Conflict Around HIV and AIDS Policy in the South African Press". IN Communicare 23(2). Available URL: http://www.journaids.org/docs/ja_research_finlay_shapingtheconflict.doc
10. Giese, S. et al. 2003. Health and social services to address the needs of orphans and other vulnerable children in the context of HIV and AIDS in South Africa: Research report and recommendations. Report submitted to HIV and AIDS directorate, National Department of Health. Cape Town: Children's Institute, University of Cape Town.
11. Human Sciences Research Council, et al. 2002. Nelson Mandela/HSRC Study of HIV and AIDS: South African National HIV Prevalence, Behavioural Risks and Mass Media Household Survey 2002. Cape Town: Human Sciences Research Council. Available URL: images/upload/ja_mirroredfiles_HSRC_Mandela_fullreport.pdf
12. Gortmaker S. et al. 2001. "Effect of combination therapy including protease inhibitors on mortality among children and adolescents infected with HIV-1". IN New England Journal of Medicine 345: pp. 1522-1528. See Abstract.
13. International Federation of Journalists' Guidelines. 1998. Brazil.
14. Johnson, L., Bradshaw, D., and Dorrington, R. 2005. "The HIV/AIDS epidemic in South Africa: Historical development and future prospects". Poster presented at the South African National HIV/AIDS conference, Durban, 7th -10th of June 2005.
15. Media Monitoring Project. 2004. Children: Dying to make the news. An analysis of children's coverage in the South African media. Johannesburg: Media Monitoring Project.
