What young people mean when they say... : the information and support needs of siblings and children of cancer patients.

Abstract

This research project investigated the lived experience of young people between the ages of 9 and 19 years who have a parent or sibling diagnosed with cancer. The study aimed at investigating the needs of these children specific to information, supports, and communication. A cancer diagnosis within the family can be traumatic and impact all members, yet children or siblings of cancer patients tend to be overlooked due to a high focus on the sick family or member. Many of these children face adjustment difficulties across all areas of life, including at school, emotionally, socially, and mentally. Siblings and children were recruited from cancer support agencies via invitation. Once families had expressed interest in allowing their children to participate and had provided consent, one-on-one interviews were conducted with these children in Christchurch. Questions explored the experiences of these children and the needs which they saw as unmet. Participants were asked about their experiences having a family member diagnosed with cancer, what has helped them cope, what they would like to know more about, and what supports they would find beneficial. Results highlighted that children may face many changes when a family member is diagnosed with cancer, as well as requiring various types of support and communication. In addition to facing family separation, they are more time-conscious, and there was an emphasis on every child being different. Children require flexibility and awareness of supports and information, with a high need of communication from parents. By having children articulate their thoughts and feelings in their own words regarding their experience of having a family member diagnosed with cancer, it can be valuable to organisations and healthcare professionals who interact with these families so that the best information, supports, and resources can be provided to this population.