Survivor and parent engagement in childhood cancer treatment in Iran

In Iran (with a population of 83 million), 19,973 children were diagnosed with cancer from 2009 to 2019 (MAHAK Charity). This study was part of the International Society of Paediatric Oncology, Paediatric Oncology in Developing Countries Committee, ‘Patient, Family and Stakeholder Engagement Task Force’ engagement study in ten low- and middle-income countries in 2019. We documented childhood cancer survivors and parents’ experiences and quality of engagement, including perceptions and expectations, during their cancer treatment journey in Iran. Fourteen in-depth interviews and three focus group discussions were conducted by three Iranian qualitative researchers with 29 participants: recent adolescent/young adult survivors (12–20 years), long-term survivors (21–30 years) and parents [36–61 years (six mothers and four fathers)] from diverse socio-economic and ethnic backgrounds. Data were recorded, transcribed and analysed, and then translated from Farsi into English. Participants’ expectations included inter alia improved communication and information flow among the key stakeholders including doctors, nurses, parents and patients. A need for improved patterns of doctor–patient relationships and communication, more effective psychosocial support and the importance of peer support groups (for survivors and parents) were reported. Participants identified areas of satisfaction and dissatisfaction regarding their actual engagement and decision-making. The dominance of a medical-only approach instead of multidisciplinary approach in care, the shortage of psychosocial support, the lack of an integrated system for providing information and delivering a package of printed material about the treatment journey and the absence of patient navigator in childhood cancer care systems were among obstacles for successful engagement of patients and parents throughout their cancer journey.