Cancer takes a toll not only on the patients but also on their caretakers. Several programs are providing educational, financial, and social support for the families of childhood cancer patients.
Several programs are providing educational, financial, and social support for the families of childhood cancer patients. Photo: RDNE Stock project
Having a child who is battling cancer is a tragedy and can be an intensely challenging experience for families and carers. Supporting relatives of cancer patients, whether financially, logistically, or psychologically, is a key goal for a handful of organisations looking to make the experience easier.
Organisations such as World Child Cancer, Young Lives vs Cancer, and Alex’s Lemonade Stand Foundation are among a small group of organisations actively providing such support. Meanwhile, research from University College London has highlighted how other global projects are seeking to provide help to families. The ultimate goal, according to those working on such projects, is eliminating the factors that prevent child cancer patients from completing their treatment—including financial hardship or fear of side-effects—and achieving the best health outcomes possible.
A 2015 World Bank report about paediatric acute lymphoblastic leukaemia (ALL) in low- and middle-income countries (LMICs) found that treatment abandonment rates ranged from 3% to 74%. In addition, a 2023 report by the Children’s Cancer and Leukaemia Group, a UK charity, found that as few as two in 10 children survive their cancers in LMICs due to factors ranging from late diagnosis, cost of treatments, or lack of availability to the right medicines. Consequently, improving the ability of families to access treatment where it is available is paramount, those interviewed say.
“You can have all of the treatments in the world, but if the child doesn’t get the diagnosis and stay in treatment, everything else is window dressing,” said Luke Thomas, CEO of World Child Cancer.
Combatting barriers to care
Insufficient financial resources are clearly one of the most important obstacles for families of child cancer patients, whether due to a loss of income for the parent caring for the child or the cost of travel to and accommodation in treatment centres. In addition, cancer patients in LMICs are especially vulnerable to interruption of their education; by comparison, those in high-income countries are more likely to have educational support networks available in schools or medical centres. There are also notable global variations in the extent of psychological or social support for young cancer patients and their families.
A 2019 study of families of paediatric cancer patients in Turkey found that a quarter of families researched had been forced to sell property during their child’s treatment, while 49% had borrowed money from acquaintances and family or taken out bank loans. Nearly half of mothers (46%) reported experiencing serious psychological problems, and 83% of child patients experienced a one- to two-year pause in education.
World Child Cancer operates in countries across Asia, Africa, and Central America, providing a comprehensive financial, educational, and emotional support package to families of children undergoing cancer treatment. In practice, Thomas says, this means first ensuring that families don’t have to fund their own transport to treatment, which in many places takes place in tertiary centres some distance from children’s homes.
“Two of the biggest challenges are getting children to hospital at a phase early enough to diagnose and treat the cancer,” he adds, noting that this requires a combination of providing financial support and raising awareness.
“Two of the biggest challenges are getting children to hospital at a phase early enough to diagnose and treat the cancer."
World Child Cancer helps families of children with cancer by funding transport to treatment. Photo: Zhen H
Once children are in hospital for treatment, the organisation provides support for a “home away from home” for parents and siblings staying to support the patient, and offers training and opportunities for carers to earn money to provide income for their family. It also offers an emotional support network for carers and patients, including play therapy supported by tablets using XPLORO, a software that educates children and family on what to expect from the moment they arrive in hospital.
In Ghana, a support safety net
Ghana is one of five African countries in which World Child Cancer works, and it provides a case study of how family support programs are used to underpin the treatment of child cancers.
The organisation partners with nine medical facilities across the country, three major treatment centres, and six shared care centres, according to Adwoa Pinamang Boateng Desu, Ghana country coordinator for World Child Cancer. The major treatment centres offer comprehensive childhood cancer services, while shared care centres offer some aspects of childhood cancer centres and act as referral centres.
Families receive ready-to-use therapeutic foods (RUTF) for the patients, many of whom present with varying levels of malnourishment, Boateng Desu says. The organisation also employs child life specialists who work in the major treatment centres, and financial support is available in various forms. Families are often referred from the shared care centre to a major treatment centre, and the World Child Cancer program provides different forms of funding for referrals.
“It covers some aspects of diagnostics, treatment, and transportation,” Boateng Desu adds. For children being cared for at one of the two major treatment centres in the Ghanaian capital, Accra, families can stay in the Sunshine Hostel, which was opened in 2022 by Ghana’s First Lady, Rebecca Akufo-Addo and is supported by the Ghana Parents Association of Children Diagnosed with Cancer, known as GHAPACC.
With 18 rooms and a total of 64 beds, parents, caregivers, and sometimes siblings can live near the patient receiving treatment; the hostel also provides breakfast and lunch.
Meanwhile, World Child Cancer also partners with a local organisation, Lifeline for Childhood Cancer, to provide income-generating activities—bead-making, the making of wigs from artificial hair, and a bakery—for parents and caregivers while they are living away from home.
“When you are enrolled into the program, you get a teacher who comes in three times a week to take you through about 10 weeks, depending on the treatment [the child] is undergoing,” Boateng Desu says. “After the training, we set you up. We also see this as an opportunity for stress reduction and [improving] wellbeing, social connection, and support, and [promoting] a sense of accomplishment once they are able to do something on their own.”
On the last Sunday of each month, the organisation meets with caregivers and brings other professionals such as clinical psychologists, religious leaders, and sometimes nurses to talk about the cancer journey and its associated challenges.
World Child Cancer’s support consists of donations, primarily from external donors, Boateng Desu adds.
UK charities field family support teams
Another organisation that has made support for families a core part of its work is the UK-based charity Young Lives vs Cancer. Young people between the ages of 18 and 24 diagnosed with cancer or parents of children aged 17 or younger can apply to the charity for a £100 (US$127) “registration grant” following an initial or secondary cancer diagnosis or a relapse diagnosis.
Grants are used to cover travel to and from hospital and parking, extra food costs, increasing household and phone bills, private tuition, accommodation near hospitals, and childcare for siblings.
The organisation also has a partnership with Citizens Advice, which assists people with legal and financial concerns as well as offers cancer patients and their families advice on welfare and housing support. The organisation can help families apply for benefits for which they may be eligible.
In addition to the financial support on offer, Young Lives vs Cancer’s in-house social workers work with families to organise childcare, help parents sort time off work, and liaise with schools to arrange schoolwork for patients during treatment.
Finally, it provides “homes from home” in nine different UK cities where children are treated for cancer.
Helping families navigate treatment in the US
Providing families with support and resources to manage the challenges of a cancer diagosis is a key part of Alex’s Lemonade Stand Foundation (ALSF), a Pennsylvania-based paediatric cancer charity founded by Alexandra Scott, who died at the age of eight from neuroblastoma.
ALSF, which operates across the US and Canada, offers a travel for care program to help families travelling for clinical trials or non-standard treatment such as CAR T-cell therapy or proton therapy outside their home regions. The program covers patients and one parent and helps around 400 families a year.
“Most of these families have not regularly travelled long distances. Imagine having to take your sick child and travel across the country because that is the only or best option; it’s very overwhelming,” says Katie Newell, family services manager at ALSF. “We can respond the same day if the clinical trial can start tomorrow and they have to go fast.”
In addition to transportation-related support such as covering airfares or petrol, the program can also help pay for temporary lodging.
The charity’s school support guidebook helps school staff with talking points to establish effective communication between home, school, and healthcare professionals. This can include providing an easier transition back to school and supporting classmates through grief and loss. Through its SuperSibs program, it also provides supportive mailings for siblings of patients that discuss coping and how to process emotions such as anger and fear. The ALSF also offers a program for kids who have lost a sibling.
In addition, the organisation helps families find doctors with the correct expertise and offers information about clinical trials. While its Find a Doctor tool offers web-based support, its clinical trial navigation tool is customised; it is based on a form that the family fills out, which Newell and the ALSF grant team use to provide a list of trials that may be a fit for the child.
The breadth of the organisation’s support reflects the variety of challenges childhood cancer poses to families, Newell says.
“It throws their whole life into disarray; the needs are really broad,” she says, adding that many families find themselves needing more extensive financial support to cover everyday expenses, such as rent and care payments, if a parent needs to stop working.
Many families find themselves needing more extensive financial support to cover everyday expenses, such as rent and care payments, if a parent needs to stop working.
“Whether they are looking for support groups or can’t pay for medicines, it can be hard to find organisations that help with those needs,” Newell adds. “We do our best to find organisations that can help so families can get the support they need.”
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