BPOS Oral Presentations

Le résumé fourni par la source

Background: Many families of children diagnosed with cancer are faced with difficult treatment decisions.They may be at risk of experiencing significant distress over their decisions.Aims: We aimed to explore parents' treatment decision-making process, as well as any information needs and preferences.Methods: We conducted semi-structured interviews with parents whose child had been diagnosed with cancer in the past 12 months.Interviews were audio-recorded, transcribed and analysed thematically.The study is ongoing; anticipated study close is December 17 (aim = 25 parents).Results: To date, 17 parents (mean age of child at diagnosis = 7.4 y) have completed the interview (response rate = 35%).Early findings suggest parents find making treatment decisions "overwhelming" and "stressful."While most parents report a preference for shared decision-making with the child's clinician, they often feel as though they have no choice because of perceived lack of options or a lack of knowledge.Parents tend not to include their child in major decisions, however acknowledge the importance for children to be involved in day-to-day decisions.Many parents experience information overload, but also report a lack of understanding of information.Many parents also sought information online.Barriers to quality decision-making include feeling distressed and overwhelmed with information.Facilitators included a good relationship with their clinician and use of simple language.Conclusions: Families require clearer information provided in multiple modalities, more guidance to engage in shared decision-making, and more emotional support throughout the decision process.These findings have contributed to the development of Delta-an online decision-aid supporting families deciding whether to enrol in a paediatric oncology clinical trial.

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