Since its publication in 1995, the Stepping Stones training package has touched children, families and communities in over 100 countries across the globe. The programme, which uses participatory activities like roleplaying, drama and discussion, has been called the longest-used HIV and gender programme in the world – one which, at its core, revolves around building safe relationships and reducing domestic violence. Stepping Stones is an example of the E in the INSPIRE Strategies – education and life skills – that helps prevent violence against children through education, awareness and behaviour change.
The woman at the heart of Stepping Stones is Dr Alice Welbourn, who wrote the training package two years after her own HIV diagnosis. Throughout her career, Welbourn had designed and implemented participatory programmes in communities across East and sub-Saharan Africa – and to help make sense of her own diagnosis, Welbourn decided to do what she does best: create a training package to help others just like her.
In the years since, Welbourn and her team have gone on a journey nearly as expansive as the reach of Stepping Stones itself. The package has been translated into dozens of languages. It has more recently been adapted to fit the priorities of children, particularly among those aged 5-14 years of age. And in 2016 the original version was wholly revised and updated to align it with the huge scientific advances that have taken place since the original publication. Importantly, Stepping Stones has taken on a life of its own through those that implement it – sparking adaptations that are sometimes met with success, and other times met with failure that brings important learnings.
End Violence spoke with Welbourn to learn about what she has experienced after more than 25 years on the Stepping Stones frontlines.
The Coalition of Women living with HIV and AIDS (COWLHA) in Malawi adapted the original Stepping Stones programme for use specifically by their members and their male partners – not with younger people. Even so, the programme still had a positive effect on their children.
1. You were diagnosed HIV positive in 1992. How did that change your life?
At the time, I was living in the UK and doing shorter-term consultancies with different NGOs. I was expecting a baby, which my new partner and I were very excited about, and I had all the usual tests run. Just to cross the i's and dot the t’s, my doctor recommended getting an HIV test as well. I said sure – I’m fit, I’m well – let’s have one. That was the only test that came back positive.
I was completely devastated. I imagined that I was going to die right there and then, and I felt like I had let everyone down. We had to make the really difficult decision to have a medical termination, a choice that left me in multiple layers of grief. I was just in a complete post-traumatic state for quite some time after that.
There was also a constant, ongoing strain of having to keep my diagnosis a secret. I didn’t tell my parents, for example, for another 10 years. Living under that strain for all that time – and a long time after that – was incredibly challenging. I don’t think people really realize that it’s not just the shock of receiving a potentially terminal diagnosis, but all the anxiety around what people will say, think and judge about you. It’s a completely different type of stress.
2. How did you cope with all of this – your HIV diagnosis, the loss of a child, and the newfound stigma that comes along with HIV?
I remember that one afternoon, I was considering throwing myself under a bus in the middle of London. I didn’t feel like I would be of use to anyone anymore, and I might as well just shorten the dying process by doing so. A few hours later, though, I met an amazing woman through a support group who told me that she was diagnosed while in prison. She told me that she was in her cell when the warden opened the food slot on her door to say, “By the way, you’ve got HIV.” Then the warden slammed it shut again. Right there and then, she decided that was it. She would get out of prison, get clean and stop using drugs, and do whatever she could to stop others from going down the same path.
I was really affected by that story. I thought to myself, if that woman managed to keep going on top of all the other challenges she had in her life, what right do I have to think about throwing myself under a bus? That was when I learned about the amazing power of peer support, which has remained a core component of my life.
Meeting someone – especially for the first time – who is like you is such a powerful experience. We often don’t appreciate or understanding just how much that can shape you going forward. I wanted to share that understanding with others, which made Stepping Stones the participatory, peer-focused programme that it became.
3. After your diagnosis, you went on to write Stepping Stones, a life-skills training initiative that works to decrease intimate partner violence, prevent HIV transmission, build communications skills, and navigate gender roles, among other objectives. How did Stepping Stones come to be, and how exactly does it work?
A year after my diagnosis, I was offered the opportunity to write a booklet about women and HIV. I asked if I could alter the assignment a bit by turning it into a training manual, one not just for women, but for men and whole communities as well. Eventually, that was what Stepping Stones turned into, incorporating a lot of the participatory training work I had been doing in the past.
Stepping Stones focuses on communication and relationship skills across genders and generations. The original programme was structured so that community members are divided into four separate peer groups based on age and gender, from around 15 years or so upwards. The groups were open to all people, including those who were HIV-positive, HIV-negative, or those without a known status.
Those four groups then work together – each with a facilitator of their own gender and age group – to decide where and when they will meet. The groups then run through a whole series of sessions based on a specific curriculum. In these sessions, the programme uses skits, role plays, and other exercises that are not literacy-based to work through specific issues. Violence against women is woven all the way through the process, along with issues of violence against children, property and inheritance rights, access and control of money and goods, shared responsibilities and decision-making around household expenditure, condom negotiation skills, and a whole raft of other things that feed in and out of that as well.
In this way, the programme isn’t just about reducing violence – it’s about all of these different dimensions to what is going on in people’s lives that affect them.
All four groups discuss the same issues on their own time and in their own way, and every few sessions, they all come together to present what they’ve found. After that, they go into their separate groups and start over. It’s basically a fission and fusion approach of separating and coming together. In the process, they build mutual respect, trust, synergy, compassion and empathy between the separate peer groups.
This creates a crescendo toward the end of the programme, where they have a whole-group presentation to their entire community around the issues they’ve been discussing. After this meeting, the issues and solutions the groups present are brought to community leaders. It can change the way a community operates and supports one another. In this way, the programme builds bridges to reach consensus around shared values and pushes communities to seek positive solutions to common challenges.
4. There are now different versions of Stepping Stones for different age groups, including children. Why is this intervention important for girls, boys and young adults?
We know how important it is to work with children between the ages of 5-9, as all international technical guidance around comprehensive sexuality education recommends starting at age 5. We created the Stepping Stones programme for use with children aged 5-14 and their caregivers in-line with that guidance, in the hopes that we could help bring up the next generation of young people to feel proud of themselves, believe in themselves, and build strength through the unity of their peer groups. We want them to recognise that they’re not alone. And on top of that, we want to give caregivers positive parenting skills to reduce violence and protect their children.
In a recent pilot project, we saw that children living with HIV in the programme showed significant improvements in their body weights and CD4 counts when compared with those in the control who hadn’t gone through the programme. We also saw an increase of healthy, positive disclosure – in other words, an increase in the number of parents telling their children about their HIV status for the first time. In the pilot, we saw the disclosure rate of Stepping Stones participants go up from 27% before the programme to 93% by the end.
An overview of the Stepping Stones with Children programme in Tanzania, created by film-maker and anthropologist Dominique Chadwick.
5. Since its publication, Stepping Stones has become immensely popular. However, it has faced issues with adaptation in various contexts. Can you tell me more how Stepping Stones has taken many forms over the years?
We absolutely welcome adaptations of the programme. It is critical to adapt the programme for each different context – and to pilot that adaptation before scale-up. And provided people have stuck to the structure and principles of the programme as we have outlined them, there are many wonderful people who have created several great adaptations out there. These are what we have tried to use as examples in this adaptation guideline.
However, we are not sure whether people access it. Even if they do, we know of one major agency in the US that decided not to pursue a discussion with us because they could not manage to budget for our recommended five weeks training process for facilitators. It’s so sad because all the evidence from the DFID What Works programme confirms all that we stated in these adaptation guidelines back in 2017, and the importance of well trained and supported trainers.
Donors and implementers seem still to be focusing on top-down, bio-medically driven approaches to reduce HIV among very early adolescent girls and young women aged 10-14. This is regularly done with short-term project funding cycles, with quantitative results-based indicators and little process evaluation. They also often work only with HIV-negative girls and young women, not boys or young children, and offer very limited training for trainers.
Other programmes realise it would be useful to work with boys and get another agency to do so. Some realise that something with parents might be useful, and try to layer that in also. It’s all well-intended, but then there is no overall coherence or synergy between the different programmes – which is what Stepping Stones has always offered. Not surprisingly, like odd bits of a jigsaw independently cut, it doesn’t join well together. It’s the building of bridges of mutual respect and understanding across genders and generations which is at the core of how Stepping Stones works. By contrast, the ‘layering’ approach doesn’t offer that focus as a core element. Some other implementers have tried to combine bits of our respective programmes – a bit of Stepping Stones, a bit of SASA!, a bit of IMAGE – but we and our colleagues in our CUSP collective feel that this is as if you tried to combine a step ladder with a spiral staircase with a rope ladder. It just doesn’t work to pick and mix like this – and in doing this, it is so easy to miss crucial bits out from each respective structure.
Unfortunately, we find that there is little or no funding available from donors promoting our programmes for us as originators to advise or guide the implementers; and no funding to support trainers to develop their own professional associations to maintain critical standards.
6. What are some of the challenges that inhibit full adaptation and implementation of Stepping Stones?
Trainers are the nuts and bolts of a good programme. It’s like taking good teachers out of schools – no matter how good the curriculum might be, it’s well-trained teachers with inherent brilliance and flare who bring learning to life for children and instil in them a zest for life-long learning. We all remember the teachers who inspired us in school, and there aren’t too many of them.
But with Stepping Stones, all the great trainers we’ve known and worked with in the past have been made redundant and have had to turn into freelance consultants to be hired and fired at whim from one project to another. Unfortunately, others have popped up describing themselves as experienced trainers whom we’ve never heard of.
Implementing agencies under current funding strategies budget to give facilitators minimum training, and the trainers we have trained find it hard to argue for what they know is needed because of their own needs to pay their bills and feed their families. So, either they give in and agree to much shorter training schedules – or the self-identified-trainers jump in and get selected.
7. All that being said, how does it feel to see Stepping Stones being promoted across the world?
It’s mixed feelings because of course, it’s really heartening to know that, if well adapted to each context, something can be of use in many different settings and contexts. Essentially, we are all sentient human beings with the same global collective dreams, aspirations and yearnings. And I have had the huge privilege to meet so many amazing people around the world in the process, doing hugely inspiring things in and with their communities.
At the same time, it feels so hard to spend so much time and effort trying to explain how it should best be used rather than being able to spend all that energy on enabling its best use to expand. We have been so fortunate to be part of the CUSP collective of evidence-based programme creators. We have all been struggling with very similar issues and it’s been a hugely supportive and affirming group to feel a part of and to produce our collective reflections on these.
8. What do you think needs to happen to end violence against HIV-positive women and children living with HIV?
Listen to women living with HIV in all our diversities – we are part of the grassroots’ women’s rights movement globally. Learn from our experiences, learn from the evidence, fund women’s rights organisations – fund what works.
Women need wrap-around sexual reproductive health and services across their lifespan – if women’s own sexual and reproductive health and rights (SRHR) are achieved, then we are best placed to protect the health and safety of our children. This is what the WHO 2017 Guideline on Sexual and Reproductive Health and Rights (SRHR) of Women Living with HIV stated, and we contributed to this by developing and conducting the global values and preferences survey which it cites throughout. Since then, we have also developed a checklist for its implementation and a booklet of case studies of what women living with HIV are doing to advance their sexual reproductive rights and health (and thereby, also make their children safer).
We know what works, and if these types of programmes were funded, we could see so much difference. We have three recent ‘podcast’ papers on funding; on the SRHR of women living with HIV; and on the importance of meaningful engagement of women living with HIV in research that affects our lives, to achieve ethical, effective and sustainable policies and programmes. We have also developed a third training manual designed to train women living with HIV as mentor mothers, to support other women like them, and to uphold their SRHR, as they go through their pregnancy journey. This then also offers their babies the best start in life. So these three manuals between them effectively respond to the UNAIDS Start Free, Stay Free, AIDS Free strategy.
But even though these documents are out there – we know they work, we’ve created the evidence base – it is still really hard to get the work funded. Many are still not aware of their existence and go on promoting policies and programmes which women find challenging and undermining, and which just make it harder for women to support themselves and their children. But if these programme and others like them, which are truly founded in grassroots women’s lived experiences could be funded, then the sky is the limit. The three films shown here all demonstrate how doing this is a win-win for the whole community – women, their partners and their children alike, with the power of their own peer support networks running through the whole process. This is how ethical, effective and sustainable change can really happen.
This short, which was filmed in Tanzania, was made by caregivers who had attended the programme – but 12 months later. Individuals were trained by Dominique Chadwick on how to use flip video cameras, and produced the whole film – including the story, filming, acting and editing – themselves.
About End Violence Champions
As part of the Together to #ENDviolence global campaign, we are celebrating these individuals and the change they are helping to create. Through Q&A-style interviews, you will learn from practitioners, activists, researchers, policymakers and children about their successes, their challenges, and what they think is needed to end violence for good. Every month, we will feature someone working on this challenge from a different part of the world, shedding light on their impact and the efforts of their affiliated organisation, company or institution.
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