What matters to children and families facing advanced cancer? Identification of priority outcomes to improve paediatric palliative care in Turkey and Jordan

Abstract

Background: The global incidence of cancer is increasing, and the Middle East is projected to be one of the most impacted regions. Increasing number of people would benefit from palliative care (PC), but access is poor, especially for children. Individuals with advanced cancer need person-centred PC, yet evidence to date has rarely asked children, young people (CYP) and their families what matters to them. Aim(s): To identify palliative care symptoms and concerns among children, young people and their families facing advanced cancer in Turkey and Jordan. Method(s): Semi-structured in-depth interviews were conducted in a Turkish University Oncology Hospital and a Jordanian Cancer Centre. Purposive sampling was used. We recruited 25 CYP with advanced cancer (age 5-17); 15 parents or caregivers of CYP of any age living with advanced cancer; and 12 multi-professional paediatric PC staff. An interdisciplinary and collaborative approach to thematic analysis using NVivo 12 was conducted concurrently across the three partner sites. Result(s): 104 interviews were conducted in Turkey and Jordan. Preliminary findings highlight that the main concerns of CYP and their families cover the existing WHO dimensions of PC. Pain was the most reported physical symptom, and fear of the pain caused by needles was one of the most important concerns for CYP. Participants reported that psychological needs were the most important for them, despite not being the priority for care teams. The isolation and limitations to conduct enjoyable activities, CYP’s ‘boredom’ during the hospital stay, and fear of infection were among the most reported psychosocial concerns. Staff acknowledged the difficulties in addressing these needs as parents and CYP’s needs and expectations were different. Conclusion(s): Our data suggest the importance of understanding the children’s psychological concerns and addressing their pain. These data will now form a measurement and quality improvement programme in Turkey and Jordan.