The project addresses the problem of insufficient support for families of children with cancer. In Poland, approximately 1,200 children are diagnosed with a malignant tumour each year. The average duration of treatment (hospital and maintenance) for this group of diseases is several years. The disease disorganises life of the family, causes social and professional exclusion and increases the risk of anxiety and depressive disorders, including post-traumatic stress disorder. The parents themselves go through a state of psychological crisis, as the child’s diagnosis causes them anxiety, terror and helplessness related to the knowledge that the child’s life is at risk and the burdensome treatment. According to the study, as many as 68% of parents have symptoms of mild depression, 16% of moderate depression and 16% of severe depression; anxiety disorders were found in 66% of parents and 50% experienced an acute stress reaction (ASD). Most paediatric oncology units employ psychologists, but support is not sufficient, and is rarely available to parents.

The project offered psychological and informational support to parents of children with cancer. An Oncoguide was created with expert content to enable self-help activities. The content was co-created by parents who, by sharing their experience and knowledge, provided support to other parents. There were also 12 videos and podcasts on topics such as work, emotions in crisis, relapse, parenting and life after treatment; and a webinar on self-advocacy.

50 parents were actively involved in the project, 11 of whom acted as selfadvocates. Through the Oncoguide, knowledge was disseminated on how to cope with the stress of a child’s cancer situation and how to counteract the social exclusion experienced by entire families. A community of parents, who were able to share their experience and learn from the experiences of others was strengthened.