Background: Children whose parents are diagnosed with advanced cancer are found to experience high levels of distress. Research has reported communication and information as some of the factors that may contribute to levels of distress in children. There is little research however, regarding what type of information and what level of communication children consider important.
Aims: This study explored children's information needs and where and how or by whom they wanted to gain the information when a parent is diagnosed with advanced cancer. This was done in order to identify any unmet needs as well as to identify barriers that may exist in children accessing knowledge.
Method: Semi-structured interviews were conducted with ill (advanced cancer) and well parents and/or any children above the age of 7. Interviews were recorded and transcribed fully, and analysed using a constructionist grounded theory approach.
Results: Twenty eight family participants were interviewed. Children described wanting honest information about parents health and treatment. Girls expressed a particular need for information regarding implications for their own health and possible future tests. Children described wanting information from a variety of sources including parents, health professionals, books, leaflets, and the internet. They expressed a need to have access to somebody who understood and who would keep their conversation confidential. Problems described in relation to accessing the desired amount of information and communication included not wanting to upset parents by asking them, not having access to professionals, and age inappropriate information. Parents identified informing children of their diagnosis and children's questions and concerns as their main challenge.
Discussion: The study suggests that improving communication within and outside of the family system will be beneficial to children whose parents have been diagnosed with advanced cancer. It suggests that such an improvement will increase support available to children and will impact on how children are able to cope with their situation.