Here, the Children’s Liver Tumour European Research Network provide insight into their work. They hope to get more parents involved in their public advisory group to improve experiences and research for those impacted by liver cancer in childhood.
Children’s Liver Tumour European Research Network is an international research project with the aim to cure more children with liver cancer. It is linked to one of the largest clinical (PHITT) trial, with partners in Europe and with associate partners in USA (Cancer Oncology Group) and Japan (Japan Children Cancer Group).
The aim of the ChiLTERN’s Public Advisory Group is to reach out and share lived experiences with parents, carers and families of children and youth with liver cancer. Since its inception in 2018, the activities that ChiLTERN’s Public Advisory Group has undertaken has grown from strength to strength. In the current health crisis, we continue to meet virtually to promote active involvement, participation and involvement with other parents to share valuable knowledge and expertise based on their own experiences. What started as a small group of parents and patients based in the United Kingdom, we now have parents/patients in the Netherlands, Spain and the USA. It is our hope that the work we do will help parents in similar situations.
ChiLTERN has circulated a survey to gain a better understanding of how parents and carers felt about their child’s treatment and where applicable about their child being treated on a clinical trial. Whilst we are aware that liver cancer in the paediatric population is rare, we are hopeful that a sizeable response of at least 30 participants is achievable.
As part of co-producing in research, ChiLTERN Public Advisory Group has produced three short mini videos, each for nursery, primary and secondary schools to increase awareness of high frequency hearing loss due to cisplatin. These videos can used by schools, especially by Special Education Needs teachers, on how they can effectively support a child in the classroom to better integrate and participate fully once the child has completed their treatment.
These videos are not specified to just liver cancer. It can used as a support for any child/youth who has a hearing loss from cancer treatment. It is our hope that these videos will create a wider impact as they can also be used by children who have had osteosarcoma, neuroblastoma, medulloblastoma or malignant germ cell tumour who also received cisplatin and have acquired hearing loss. More importantly, other children watching these videos would also be able to relate and understand a little bit more about the children who have high frequency hearing loss. These videos are made possible by the kind contribution of Fennec Pharmaceuticals.
Additionally, we have also produced patients’ stories on ChiLTERN’s website. We are very keen to hear from other parents as well – either in the UK or beyond. Our latest efforts involve working with parents/carers groups in the USA (Jack’s Angels Foundation and Momcology) which has a well-established network of parents from all over USA, Europe and beyond. It is our hope that these efforts will lend itself to further contribution from parents and patients into research and helping parents and patients with liver cancer or any other cancer.
To find out more and get involved, please contact Mrs Norihan Mohd-Taib via email email@example.com.