Survivor and parent engagement in childhood cancer treatment in Iran

Abstract

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.

Factors influencing treatment decision‐making for cancer patients in low‐ and middle‐income countries: A scoping review

“…Factors related to professional interaction and communication were described in 25% of articles 45,46,49–51, 54–56,61,62,65–88 . Factors related to professional interaction and communication in articles that focused on the perspective of patients and families included the invitation to participate in decision‐making, 54,62,65,70,88 trust, 70,73,81 or distrust 49,51,86 in their healthcare providers, variable quality of patient‐healthcare team communication, 79,86,87 including disempowerment of patients, lack of patient understanding of therapy or therapeutic options, and fear of raising questions risking the potential for inferior care 87 . Additional factors included deliberate miscommunication to convince a patient to accept care, 87 time constraints of the physician, 49,50,68 and language barriers that prevented the effective description of cancer and cancer therapies with patients and families 87 …”

“…One study described gender bias in the treatment of osteosarcoma and the neglect of female patients 66 . Other factors included treatment toxicities, 46,48,49,51,53,54,56,57,63,66,70,74,79,80,85,87,89,93,98,100–103 specific disease features, 50,51,56,57,59,64,76,77,80,96,98,104 the results of diagnostic workup, 65,75,77,80 and access to cancer‐directed treatment and supportive care resources and personnel 46,49–51,54–56,61,62,65,66,68,70,73–75,77,78,80–84,86–88,94,98,102–105 …”

Unmet needs of the Iranian mothers of the children with cancer and the identification of the related factors: A descriptive-correlational study

“…In this regard, previous studies have shown that parents expected to know the facts about their child's illness. Parents are confused when their child is diagnosed with cancer, and constantly search for information about the disease type, treatment, and outcome (Moridi et al, 2018;Ahmadnia et al, 2021).…”

Establishing a pediatric radiation oncology department in a low‐ and middle‐income country: Major challenge in implementing the Global Initiative for Childhood Cancer

“…14 Thirty-two hospitals provide pediatric cancer care under the supervision of medical universities; however, national guidelines are lacking. 15 Treatment costs are covered by a few health care insurance companies and nongovernmental organizations (NGOs). 16 According to GLOBOCAN 2015, of 1567 children diagnosed with cancer, 66% died.…”

“…The age‐standardized incidence rate of childhood cancer under the age of 15 is 11.9/100,000 14 . Thirty‐two hospitals provide pediatric cancer care under the supervision of medical universities; however, national guidelines are lacking 15 . Treatment costs are covered by a few health care insurance companies and nongovernmental organizations (NGOs) 16 .…”