It is estimated that two thirds of children with cancer never reach a treatment centre, and of those that do, most are in late stages of the disease. Research showed that an ongoing awareness campaign on the early warning signs was needed to improve the rate of referrals at an earlier stage of the disease.
Since 2011, CHOC Childhood Cancer Foundation has been working with the Department of Health and Traditional Healers Organisations to give health professionals, healthcare workers, traditional healers and communities knowledge of childhood cancer. These individuals are taught the St Siluan early warning signs and learn how to demystify myths and stigma in communities. By sharing the knowledge we hope to change the attitudes and practices of people towards the disease and in doing so reduce the mortality and morbidity of children with cancer. The training began in five districts of Gauteng and we have since expanded our national footprint as far afield as Venda. The CHOC regional offices also conduct outreach campaigns in local communities.
“First we approached the Department of Health to gain their endorsement to provide training for professional nurses and clinical managers,” explains Programme Development Manager Adri Ludick. “Then we started to train health promoters and home-based care workers – the people who walk in the dust and the rain to inform communities about health-related issues, including childhood cancer. CHOC provides them with information to use in the communities they serve.”
Citing the example of the Makhuya District in Venda, Ludick explains that training once in an area is not sufficient – follow-up sessions are needed to see results. Awareness in this region began in 2013 with the training of clinic sisters and home-based careworkers in the Makhuya Clinic. Then CHOC did a week of joint training with other organisations on childhood and adult cancers, followed by forum group discussions to assess how much the first trainee group had understood. “I felt like crying, it was so satisfying because the recall was so accurate,” says Ludick.
Further training of clinic managers followed in subdistrict clinics. A highlight was presenting to 26 local traditional leaders, and the community at the local lekgotla. Securing this presentation required negotiations with local traditional authorities for some time before. Ludick explains that the roads in this region are so bad that it can take hours to travel from one place to another, making it impossible to train at more than four or five clinics in a week. In addition to the challenge of equipping local health professionals with knowledge, the onerous referral system causes delays in a child reaching treatment timeously.
“In the remote Makhuya region a child would be referred from a smaller clinic to the main Mutale Clinic and from there to the Donald Fraser Hospital in Thohoyandou before being referred to a paediatric oncology unit – the closest is the Paediatric Oncology Unit at Polokwane Provincial Hospital,” says Ludick. Even once the child is referred to a paediatric oncology unit, the delays can continue, with the family having to gain the consent of elders or traditional and religious leaders for treatment to start. This could mean days of travelling and waiting, with the sick child in tow. In some cases, these delays could cause the child to die before being treated, or lead to much more invasive treatment that would not have been necessary if the child had been referred sooner.
Training also tackles the myths which can create a culture of silence that is not good for promoting diagnosis and accessing treatment. “In some local communities people will not talk about cancer due to stigma or myths and when survivors come back to the community they will not talk about their experiences either,” says Ludick. CHOC aims to continue to expand its reach into far-flung regions of the country, whilst growing the education campaign. Recently CHOC trained some of its own employees and volunteers through SETA accredited training on how to become an effective facilitator and how to spread advocacy in communities. Working with the Department of Health, CHOC trained childhood cancer advocates in the Free State, Gauteng South, Mpumalanga, Limpopo, the Northern Cape, Western Cape and KwaZulu–Natal. To date we have trained close to 30 000 trainees in seven of the nine provinces of South Africa.
In 2017 after many stakeholder meetings and trainings, the Vuka Khuluma (which means wake up and talk) awareness campaign was launched in KZN. The aim of the campaign is to increase the survival rate of children diagnosed with cancer and life-threatening blood disorders and to decrease disabilities relating to the late diagnosis thereof. The strategies of the campaign are firstly to conduct accredited training workshops for health professionals, healthcare workers, NGOs and traditional healers on primary healthcare. Secondly, the campaign seeks to research a baseline study of the knowledge of cancer stigma by collecting in-depth knowledge on the public’s awareness, attitudes and health practices regarding childhood cancer and stigma in targeted communities. Thirdly the campaign hosts community outreach events and distributes educational material in the community to address misconceptions about cancer; share survivor stories and awareness campaigns, and educate communities about childhood cancer and related myths. Lastly, the aim is to highlight issues that contribute to the lack of good treatment outcomes for patients and advocate with decision makers to provide solutions to such issues.
From June 2017 to January 2018, CHOC trained 1855 trainees during 40 training sessions in 6 districts. During May 2018 we will launch the first community activation in uMkandyakude and train the first Master Trainers. Different toolkits for specific strategies have been designed and adapted to literacy level and target audiences. We are in Year 1 of the 5-year pilot project.