Home Away From Home: A Refuge for Families Facing Childhood Cancer
In interview with Carl Queiros, CCI’s Executive Director, we explore the impact of the Home Away From Home program on countless families.
CCI has been leading major global initiatives in childhood cancer. How does the Home Away From Home programme align with the organisation’s mission and vision?
Our mission is to ensure that all children and adolescents with cancer have "access to affordable, essential cancer medicines and high-quality childhood cancer treatment and care everywhere." CCI and its members have demonstrated repeatedly across the globe that, in order for treatment and care to be effective, it must be holistic.
There must be a qualified medical team, suitable and available drugs, and good patient and family support. It is well known that one of the major impediments to treatment access and adherence is socioeconomic factors. Patients and families need support in various ways: psychosocial support, transport, nutrition, and accommodation, to name a few. For families that cannot afford it or who live far from treatment centres, a place to stay near the treatment centre—a Home Away From Home—is essential for them to access and continue treatment. This is central to our vision and mission.
Can you describe the impact that the HAFH programme had on the three organisations selected last year?
Three HAFH grants were awarded last year: one for the construction of a new home (Zambia), one for the purchase of a home (Bolivia), and one for the running of an existing home and expansion of services (Malaysia). All of these projects have gone very well and will have a significant impact on paediatric oncology patients and families.
For example, in Zambia, the Kayula Foundation was operating a home from a rental property while building the new facility. Before the home was in operation, the abandonment rate in Zambia was 45%. After opening, it dropped to 25%, despite the rental home having insufficient capacity. The new home funded by HAFH offers significantly more space and rooms, so we expect the abandonment rate to decrease even further.
In La Paz, Bolivia, an assessment of the project highlighted the home's value. One remarkable finding was that 100% of families stated that, without the home near the treatment centre, they would not have been able to bring their children for treatment due to financial constraints.
Similarly, the National Cancer Society in Malaysia has seen a very positive response from beneficiaries, with significant improvements in the care of children and families.
Phase 2 of the Home Away From Home programme has just opened for applications. What were the key learnings from the first phase, and what are your expectations for this next stage?
Phase one was very successful, both in terms of process and outcomes. One key learning was that by making three large grants, we were unable to support smaller grant requests, particularly for operational costs.
This year, we have split the fund into two: one for capital projects (house construction, purchase, or renovation) and another for operational items (rental, maintenance, services at the home, etc.). This way, we can provide a few smaller grants while still awarding two or three larger ones.
Access to proper treatment remains a challenge for many families. How does providing accommodation impact survival rates and the quality of life for children with cancer and their families?
As mentioned earlier, a Home reduces treatment abandonment. When a home is available near a treatment centre, families are more likely to bring their children for treatment and continue it until completion.
Beyond providing shelter, these homes offer essential care and support, including psychosocial care, nutritious food, and transportation. Nutrition is closely linked to better treatment outcomes. The combination of these services significantly increases the chances of successful treatment, ultimately leading to better recovery and improved survival rates.
Additionally, Homes significantly improve the quality of life for children, adolescents, and their families. In low-income settings where no Home facility exists, families often sleep on hospital floors or rent unsuitable accommodation, struggling with nutrition and overall well-being. Homes provide essential needs (transport, nutrition, hygiene, and emotional/psychosocial support) and a sense of belonging, making the childhood cancer journey more manageable.
CCI works closely with regional organisations and partners such as Foundation S. How have these partnerships evolved, and what impact have they had on the implementation of programmes like this?
Partnerships are key! The need is vast, and resources are limited. CCI has three main global partners: Fundación La Roche-Posay, Servier, and Foundation S. All three have been highly supportive of our programmes, and without their support, many of our initiatives would not be possible.
These are not just donors—they are partners. They work closely with us to understand the needs of paediatric oncology patients and families, help develop our programmes, and contribute to achieving our goals. We are fortunate to have such excellent global partners.
Looking ahead, what are the key focus areas and challenges that CCI plans to tackle in the coming years?
CCI started as a fellowship of parents of children with cancer and evolved into a knowledge-sharing association, exchanging best practices through materials and conferences. In recent years, we have focused on providing practical support to our members and developing their capacity.
Our global projects reflect this approach, including Enlace, HAFH, Coursera, Giving2Children, and the development of psychosocial standards. However, there are key programmes our members provide that we do not yet support in a tangible way, such as nutrition, palliative care, and advocacy (for patient rights, survivor support, and access to medicines).
We aim to support all essential programmes and services that our members provide. In 2025, we will launch a new Nutrition programme and initiate research on Palliative Care to understand the landscape and identify capacity-building needs. Additionally, SurNet, our globally coordinated survivor programme, will enhance support and resources for childhood cancer survivors. We are also in the early stages of developing a strategy to address access to medicines.
The global community plays a vital role. How can organisations, healthcare professionals, and members contribute to strengthening CCI’s efforts?
Absolutely—this is a team effort! We work closely with global partners, including SIOP and St. Jude, among others. Our priority is to support our members by helping them build capacity and strengthen their programmes.
CCI members and volunteers can also contribute by participating in our campaigns, events, initiatives, and programme working groups. There is a lot happening at CCI globally, and I encourage volunteers and members to get involved. Together, we can save more children's lives!
To wrap up, what message would you like to share with families, survivors, and allies who work tirelessly every day to change the story of childhood cancer?
You are greatly appreciated, and you are making a difference! A huge thank you for everything you do for children and adolescents with cancer and their families.
There is a strong connection between successful treatment and the support of civil society organisations, including parent groups. Conversely, in treatment centres without patient and family support organisations, patients and families face greater challenges, and treatment abandonment is more common.
Once again, together, we can save more children's lives!