Purpose: Communication is often a concern in palliative care, as children and their families describe communication challenges among themselves and their healthcare providers. The National Cancer Institute’s 2016 recommendations advise parents to have open and honest communication about cancer with their children, but questions remain about what, how, and when to communicate. The American Academy of Pediatrics recommends that children participate to the fullest extent possible. However, little research has explored communication preferences and strategies of parents and children diagnosed with cancer. The purpose of this pilot study was to explore communication styles and preferences among children (ages 7-17 years) with cancer and their parents/caregivers through a cross-sectional, qualitative design.
Methods: Following a study conducted in 2016 using focus groups with children with cancer and their parents, researchers developed interview questions and recruited 8 children and their 15 parent caregivers (11 mothers and 4 fathers) at least 6 months after initial cancer diagnosis. Researchers conducted in-depth interviews with each participant between January-June 2017 that were audio-recorded and transcribed. Three researchers used content analysis and reached consensus on themes that emerged from the data.
Results: Five themes emerged related to telling children about their cancer diagnosis: How to tell, who should tell, changes in prognosis, side effects of treatment, and who should be included in the disclosure. For example, one 14-year-old girl said, “They should talk to their parents and let their parents tell them “. Similar parent perceptions also included the theme: Talking with the whole family. A father said, “I would want to talk with our whole family ... I'm not sure that I would mind if the doctors or nurses or someone were in the room as well, but I would want to be the one to deliver the news. Not everybody's like that, but I would.” A mother said, “I think the parents need to be able to wrap their own heads around it before they can deliver the information to their children in an effective way ... without freaking their kids out, you know what I mean? “ Participants’ preferences varied by age, gender, and diagnosis.
Conclusion: Data reveal communication-related difficulties encountered by children with cancer and their parents throughout the disease trajectory. Attention is called to the communication challenges experienced by families in getting information from the healthcare team at the time of diagnosis and changes in prognosis. Quality communication during cancer diagnosis and treatment is challenging and requires healthcare providers’ knowledge of developmental needs and family preferences. Results of this study reveal a need for use of developmentally appropriate, evidence-based educational materials 1) to equip providers and 2) to best inform parents on how and what to communicate concerning their child’s disease. Cultural and developmental differences have global implications for awareness of and sensitivity to communication preferences in the face of serious disease.