Photo by Alexis MacDonald/SLF

It Takes a Village

Community-based organizations respond to the orphan crisis


Next: Grandmothers to Grandmothers Campaign >>

Previous: << A message from Stephen Lewis


Featured organizations

The Nyaka AIDS Foundation (NAF) works with children orphaned by AIDS and their grandmothers in rural Uganda to end systemic deprivation, poverty and hunger through a holistic approach to community development, education, and healthcare.

Touch Roots Africa (TRA) supports orphaned children in Lesotho and southern Africa with psychosocial support, child protection, basic project management and advocacy, using an approach that focuses on child and youth participation.

The mission of the Ekupholeni Mental Health Centre in South Africa is to provide comprehensive mental health services, with a focus on HIV and AIDS, involving community-centered processes of healing, recovery and empowerment.

Women Fighting AIDS in Kenya (WOFAK), run by women for women, empowers, provides care, and supports women, youth and children infected with and affected by HIV and AIDS through community groups and targeted programming.

Young Happy Healthy and Safe (YHHS) in Zambia provides sexual and reproductive health and life skills education for young people, facilitates income-generating activities, works with grandmothers, and provides educational support for vulnerable children.

Since 1988, Makerere University-Johns Hopkins University (MU-JHU) has helped over 6000 families in Uganda affected by HIV/AIDS through research, training, prevention, education, and healthcare.

By Ilana Landsberg-Lewis

In Africa today, there are 17 million children orphaned by AIDS. It is an almost impossible number to make human, and yet it represents individual lives: babies, children and adolescents, all in desperate need of loving attention and care. As the pandemic unfolds and these children grow, new challenges emerge to keeping them healthy, happy and secure. Increasingly, we hear from the grassroots groups with which we work about the growing number of child-headed households, the crisis around orphans in their adolescence, and the epidemic of sexual violence. They are working with tenacity, insight and tenderness to resurrect the lives of orphans and other vulnerable children, to ensure that they grow with a sense of belonging, opportunity, and loving support.

Underlying all of their work is the understanding that with the loss of so many family members, any remaining family structures must be protected. These organizations work diligently to keep siblings together and family homes intact. They also engage the entire community in creating a network of care around these children and strengthening the bonds among their peers to ensure they have as many sustaining relationships as possible. This is essential to the development of their identity and confidence.

We cannot know what it will ultimately mean for sub-Saharan Africa to emerge ten years hence with a population of young adults who grew up at the epicentre of the AIDS crisis. But what we at the SLF do know is that it will be a better future because of community-based interventions.

In this conversation, six of our partners share some of their insights and concerns, and the dynamism and determination of their response to the orphan crisis.

Juliane Etima
OVC Coordinator, MU-JHU, Uganda

Jackson Kaguri
Executive Director and Founder, Nyaka AIDS Foundation, Uganda

Motloheloa Molupe
Programmes Manager, Touch Roots Africa, Lesotho

Antje Manfroni
Executive Director, Ekupholeni, South Africa

Dorothy Onyango
Executive Director, Women Fighting AIDS in Kenya (WOFAK), Kenya

Zikhalo Phiri
Executive Director, Young Happy Healthy and Safe (YHHS), Zambia

When children lose their parents to AIDS

Dorothy: At Women Fighting AIDS in Kenya (WOFAK), we have learned that the vulnerability of the child begins as soon as the parents become ill. Then, as their parents get increasingly sick and die, the destructive effect on the child worsens. It brings so much suffering to the child: both the psychosocial impact, and the reality that children have to become caregivers at a very early age. In some instances they are discriminated against by their communities because their parents died of AIDS. Children have a right to education, food, shelter, and they must play and learn and grow—this is something we see compromised when children are orphaned.

Photo by Alexis MacDonald/SLF

The challenges inherited by a child who has lost parents to AIDS are compounded by the sheer number of children in a similar situation.

Molupe: I agree with Dorothy. The challenges faced by these children are numerous and begin even before their parents die. They find themselves taking care of their sick parents and can become infected themselves. They grow up without parents from an early age and have to fend for themselves. They may not be able to make ends meet, so they might engage in sex work, and because of the emotional stress turn to drugs and alcohol.

Zikhalo: When parents die there is an urgent question: who is raising this child now? There is always a lack of food, children go hungry; there is a lack of shelter, children are sleeping in the streets; there is a lack of health care, and that can result in death of the child. We see that so many orphans are dropping out of school because there is inadequate support, and no focus for them to continue their education.

Psychosocial support

Juliane: These children need support beyond the physical things you can give them, like food or shelter. They need to deal with their emotions around living without parents, or with different caregivers, unstable family environments and stigmatization. As children grow older, they become more anxious. They have questions: did their parents die of AIDS? Are they HIV positive? Will they graduate from school? So many youngsters have asked me “Will I live to be 30 or 40?” “Will I live to become the doctor I wanted to be after my parents died of AIDS?” “What will stop me from dying the same way?” These are the kinds of issues that only counselling can really help to address.

Photo by Alexis MacDonald/SLF

Children orphaned by AIDS require long-term counselling that reflects their changing needs as they grow from toddlers to teens.

Antje: We find that psychosocial care is absolutely of the essence and there is no time limit for it. It is no good to say we will give support to children of child-headed households for two years and then expect they’ll be fine. They won’t be. They need ongoing support until they’re grown up, just like any child.

Molupe: In Lesotho we have formed youth clubs that help children develop the capacity to provide support for one another. These clubs are for all children, not just those affected by HIV and AIDS. Here, children are learning their rights, building confidence and establishing strong support networks. If their relatives are trying to take their property, for instance, because their parents have died, they learn how to protect their property. The clubs are preparing children for the future, and how to deal with such challenges.

Juliane: When children are supported emotionally, they are able to advocate for themselves. We had a conference where children came and talked about issues that affect them. The children then went ahead and drafted a petition, which was discussed in our Parliament, and we have seen the Ministry of Health actually starting to listen to their voices. The youth in the urban areas were saying that children in the rural areas were not getting the same services they got, and now they are asking their government to deliver drugs to the rural centres so the rural children don’t have to walk such long distances to look for services. When children learn how to express their needs and feelings, and find their own voices, this can be a powerful tool for change.

Antje: Another piece to this is that counselling is essential to keeping children in school. Young caregivers in child-headed households who have received this psychosocial care seldom drop out of school because they have learned how to seek out support. We’ve had amazing progress with them remaining in school all the way to grade 12, even gaining entrance into university, even graduating. It is the continuity of ongoing emotional support that makes this possible.

Education

Jackson: Where we work, in the poorest communities in rural Uganda, we find that education is not just about gaining knowledge and skills, but it is also a matter of life and death. It is in these classrooms that they break the cycle of poverty and systematic deprivation. I say systematic because the grandparents of many of these children did not have formal education, and many of their parents didn’t either. For so many, the reality is that they are the first to step into a classroom, to learn in that environment, and to speak English. They know that without education they will never read a book, read a sign that will take them somewhere, or step out of their situation. But for a child orphaned by AIDS, there is little or no hope of going to school; even though elementary education is free, the costs of uniforms and school supplies makes things impossible. That is why at Nyaka, we decided we simply must make all of the elements of education free, including secondary school fees.

For orphaned children, school provides a sense of belonging—the child knows that someone believes in them to the extent that they will get them into school. It also provides them with a new sense of possibility. When their parents died it seemed that their opportunities were buried with them, but now the orphans have to imagine a different future. They can say to themselves “now I am going to school; maybe one day I can become a teacher, a pilot, a musician”—the doors and windows to their future are open.

Education will break barriers for these children, especially girls. It gives a voice to one to speak out against injustice, to another the ability to refuse marriage, and to another the chance to build an entirely different life because they are not as poor as mum and dad.

Photo by Alexis MacDonald/SLF

Community-based organizations are experts on overcoming the barriers to getting and keeping orphaned children in school, especially girls.

Orphaned girls are the most affected

Dorothy: Girls are the most affected when they lose their parents. The model we have adopted at WOFAK is training community workers to work with girls, to identify their needs and ensure that, as much as possible, those needs are met. For one it might be a new uniform, for another it is support as the caregiver in her household to return to school, or protection from violence and HIV prevention. There are so many heightened risks for girls when the family is hit by HIV, and managing those vulnerabilities is essential so that girls can grow to their full potential, stay healthy and safe, and have the future they deserve.

Molupe: Girls definitely have more trouble than boys. Girls struggle with all of the same challenges as boys that we have been talking about, but on top of that you find girls becoming vulnerable to sexual exploitation, engaging in survival sex, and being forced to marry at a young age—when they are 14, 15 or 16 years old. We also see young girls being forced to become domestic workers, or engaging in inappropriate sexual relationships with older men to pay for school fees.

Zikhalo: To add to what my colleagues are saying, most of the girls we see who are being taken advantage of and being abused are orphans. That’s why we emphasize the issue of sexual and reproductive health with the girls, so that as they grow they have the knowledge, the information, and the self-esteem they need to protect themselves.

Jackson: In so many cases it is the grandmothers who are now the parents of these orphaned girls. So much has changed since they parented their own children, and so we include in our curriculum parenting workshops for grandmothers so that they can better play their role as a resource of support for these girls. It is essential for girls to have this support from their grandmothers, because when their parents die they lose a sense of who they are and it is critical to build their resilience and self-esteem. At Nyaka we encourage girls to build their leadership and decision-making skills so that they can dream of a different future.

Adolescents in crisis

Juliane: The growing concerns for us are the huge challenges around sexuality and HIV for orphans now in their youth. When they’re teenagers they don’t want to be in the pediatric clinic, and they don’t fit into the adult clinic. Young people find it easier to confide in their peers rather than health workers. We’ve found that when teenagers are trained they can gain the skills to support one another and lead a healthier lifestyle. Now they are taking leadership positions within their different groups, and they’re encouraging their peers to access the services that are available.

Photo by Alexis MacDonald/SLF

This training workshop for teen home-based care workers in rural Namibia focuses on developing leadership and peer networks for vulnerable adolescents.

Dorothy: To add to what Juliane identified, we’re providing youth-friendly clinics and services, and working with the Ministry of Health in the health facilities. They gave us space so that we can have a youth-friendly centre where young people go to talk about their issues. If they are sick they are taken care of by the nurses, and there are teens who are counsellors who speak to their peers so they don’t feel intimidated. They have space to meet and share their experiences, and encourage other youth to come in, knowing they will not be interfered with; they can talk about really difficult topics such as why they have turned to sex work.

Zikhalo: We also need to build the capacity of the whole community system to deal with young people’s sexual health and safety, including the parents, grandmothers, guardians, teachers, and government departments working in the community. At YHHS we engage traditional counsellors, the young people themselves, the church leaders—we’ve actually trained them to handle the issues because we know HIV positive orphans and their young vulnerable peers are supposed to be happy, healthy and safe.

Disclosure and ARV treatment

Juliane: We are struggling now with the issue of adherence to medications. This is lifelong treatment, and children often start the ARV treatment right from birth. They will get to a point where they understand what is happening to them and the burden just seems too much. They come to us and say “I am tired; it is just too long for this drug, for how long am I going to take this drug?” If we don’t prepare these children to appreciate the importance of this treatment, and they don’t have the support structures in place, how are we going to keep them on the medication? So often orphans have little or no family support. Just providing medication alone, therefore, will not do the trick. We also have to appreciate the huge effort that the caregivers need to put in to ensure that children keep taking the medication the way they are supposed to, at the right time, and in the right dose, with the right nutrition.

Antje: We do workshops with caregivers to help them play out the scenario of disclosing to a child their HIV status. We hear and discuss the enormous fear of ostracization within the community. That is not an unfounded fear, it’s realistic. We work through it and help caregivers develop strategies to have the ‘disclosure discussion.’ They need to be able to support themselves and the children.

Community care is the answer

Zikhalo: At YHHS we feel that the solution to the orphan crisis is to raise them within the community. When you look at the sheer number of orphans, even their extended families cannot provide the care that is needed for all of them. But the community continues to be a safe place. We do not support orphanages because we do not see that community link—the connection is broken—whereas an orphaned child who is supported within the community still belongs to everyone and contributes to the community. There have been cases where orphanages have returned the children to their communities but the damage had already been done. These children were disconnected from everyone and had even forgotten about their lives with their parents.

Photo by Alexis MacDonald/SLF

After-school programmes provide a safe space for children to share and learn while offering respite to their caregivers.

Dorothy: It’s true that we have to work to make sure the orphans can stay with relatives—a grandmother or an auntie—because sometimes they are not able to take care of orphans by themselves and need help to manage. We also work very closely with the community leaders to ensure that the children are not exploited, that they are kept in school, and that they are visited by nurturing community health workers. We want orphaned children to have that sense of belonging—in orphanages they only get individual support, not the group support that comes from community.

Juliane: The environment in an orphanage is not the same as the real environment in our communities. Children living in the community are facing the day-to-day challenges of life, and they only become stronger when the community supports them to overcome those challenges. They realize that in life there are always things that will come your way and you should be able to address them with the support you get from family and community. When it comes to siblings, there’s also that special bonding that creates a family. If you separate the siblings and take one to a different orphanage, as sometimes happens, that bond is always broken. We know that for the African society we live in, the best result is when community and families take responsibility for orphaned children and support them to face the real life challenges before them. We also know that it is not just best for the children to remain in the community, but for the community to remain with these children. They are our future leaders and decision makers and we need them as much as they need us.


Next: Grandmothers to Grandmothers Campaign >>

Previous: << A message from Stephen Lewis

News

Include women-led organizations in Canada’s reproductive health projects July 20, 2017

MUSIMBI KANYORO and THEO SOWA, The Globe and Mail

Dare To Wear Love Gala to Introduce Launch of Urgent Stephen Lewis Foundation LGBTQ Initiative May 5, 2017

Kim Hughes, SAMARITANMAG

Upcoming Events

Winnipeg Grandmothers Giving Back - December 28, 2017

Winnipeg, Manitoba

Capital Grannies Present : Trivia Night February 18, 2018

Ottawa, Ontario