More information
Description
Each year, approximately 1200 children in Poland are diagnosed with cancer. According to Lazarski University Healthcare Management Institute research, this condition disrupts current family life, contributes to social exclusion and exclusion from work, and increases the likelihood of anxiety and depression. Parents of child patients require professional support at least for the period of illness, but this is not sufficiently provided. Most child oncology wards have a psychologist, but usually this person works on more than one pediatric ward. In effect, therefore, they first devote their time to children, and parents rarely have an opportunity to get advice themselves. The aim of this project is to provide psychological support and information, and counteract exclusion by creating the Oncoguide, which consists of expert content enabling self-help activities. We chose the topics for the guide based on our experience in psychotherapy with parents on hospital wards. We will also conduct 50 interviews with parents of child patients, and adjust/confirm the selections we made on that basis. We will invite a group of 12 parents of child patients to work with us directly to produce the Oncoguide. They will describe their experiences and needs, to help other parents. 12 videos with subtitles and podcasts will be made and posted on an open YouTube channel and streaming platforms, and this will be a permanent and unique information source. This will help to disseminate information on methods of dealing with crises and problems when a child has a tumor, and to reduce the stress felt in that situation, and the sense of social exclusion. In addition to experts, 50 parents of child patients will contribute to producing the guide, during and upon completion of oncology treatment.
Summary of project results
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.