Who can participate
- Parents of children with cancer (during or after treatment for childhood cancer)
- Children (15y+) with cancer (during or after treatment for childhood cancer)
- Healthcare professionals
Please note that this study requires that children/parents speak Dutch
Goal
The goal of this study is to create a care network called KinderOncoNet. In the study we will investigate the wishes and needs of children, parents, survivors and caregivers for care close to home. Through this care network, children being treated for cancer, parents and survivors can find each other and entrust care. Also, knowledge and expertise about childhood cancer is available in the right place at the right time and care-related questions can be answered close to home. This should contribute to better continuity and quality of care.
Background
Every year, about 600 children in the Netherlands are diagnosed with cancer. Pediatric cancer treatment has many side effects and late effects. Parents and children often struggle with various requests for help during and after oncological treatment. In addition, families struggle to find a healthcare professional close to home to help them answer their care questions. Allied healthcare professionals close to home are important for treating and/or reducing side effects and late effects of childhood cancer. Moreover, they provide treatments aimed at improving the quality of life of these children.
Parents, children and survivors, both during and after treatment of childhood cancer, regularly have questions about exercise, nutrition, sleep, school, work, psychosocial aspects and sports. These questions are preferably answered as close to home as possible. KinderOncoNet will contribute in this.
Because childhood cancer is rare, allied healthcare providers come into relatively little contact with children during or after their treatment. For healthcare professionals, it is important that, in addition to existing expertise from the Máxima center, specific training and education is offered. We will provide this from building a multidisciplinary care network and knowledge platform. Through this care network, parents, children, survivors and healthcare professionals will be able to find each other and entrust each other with care. Both during and after treatment, this network close to home plays an important role for parents and children for finding a healthcare professional or other information.
What will we do?
Through focus group discussions with parents, interviews with children and a Delphi survey for healthcare professionals, we will explore desires and needs for building KinderOncoNet.
In the second phase of the research we will:
- build the care network
- make work and communication arrangements
- create knowledge products, such as a knowledge platform, care finder for parents/child/survivors/healthcare professionals
- create e-learnings
In the final phase, we are going to evaluate the developed care network with child/parents/survivors and caregivers.