The right of the child to communicate forms the basis of this project, and its goal is to achieve symptom relief for the child with cancer, and to maintain —or indeed enhance— his/her well-being. The project is based on the principles of universal design, meaning that all content is explained and implemented with support functions such as text, images and sound. Both Sweden and South Africa have challenges with regard to language barriers impeding the communication of symptoms between children, legal guardians and healthcare professionals. Children with cancer have the right to actively take part in decisions regarding their health and, in order to achieve this, they need support to communicate their symptoms; for functioning in their everyday life, such communication support largely relies on information, communication and technology.
All together, this project aims to enhance the ability of children with cancer to communicate symptoms from their perspective in an attempt to facilitate person-centred care to promote coping, health and well-being in these children. An interdisciplinary team of researchers and multi-professional clinicians from Sweden and South Africa will generate new perspectives about the issue of symptom communication, management and relief. The digital tool will be tested in both Sweden and South Africa, and this application for funding relates to the studies in Sweden. Data analyses from both countries will be conducted with collaboration between the two countries.
A complex intervention has been chosen to facilitate an alternative approach to symptom assessment and communication of children’s symptoms in paediatric oncology care — with this modified practice consisting of: a) a digital tool, which can be used by children, legal guardians and health care professionals alike, but is driven by the children themselves, b) workshops with paediatric oncology teams about enhanced symptom communication that is person- and child-centred, and c) one coach/research assistant at each of the clinical departments to support the implementation of the intervention.
Within the project, a survey will also be translated to evaluate the effects of person-centred care, that is, Visual Care Measure.
The development of a digital picture-based tool for communication support may enable children with cancer to effectively communicate their symptoms and improve their well-being. The goal is to increase the child's right to participate by using a person-centered approach.
- Associate professor Stefan Nilsson, University of Gothenburg
- Professor Jonas Bergquist, Uppsala university
- Associate professor John Chaplin, University of Gothenburg
- PhD William Jobe, University West
- PhD Katarina Karlsson, University of Borås
- PhD Tomas Lindroth, University of Gothenburg
- PhD Anneli Schwarz, Södra Älvsborgs Hospital
- PhD Margaretha Stenmarker, Sahlgrenska University Hospital
- Associate professor Gunilla Thunberg, Sahlgrenska University Hospital
- Professor Joakim Öhlén, University of Gothenburg
- Mastersstudent Johanna Hagman, Skaraborgs Hospital
- PhD student Angelica Wiljén, Södra Älvsborgs Hospital
- PhD Ensa Johnson, University of Pretoria
- Professor Juan Bornman, University of Pretoria
- Professor Jennifer-Anne Chipps, University of Western Cape
- Professor Alan Davidson, University of Cape Town
- Physician Jan Du Plessis, University of the Free State
- PhD Karen van Zijl, University of Pretoria
- PhD student Khetsiwe Dlamini-Masuku, University of Pretoria
- PhD student Arine Kulyer, University of Pretoria
- Mastersstudent Christi Louise Bothma, University of Pretoria
- Mastersstudent Gomolemo Mahakwe, University of Pretoria