“Some things are even worse than telling a child he is going to die”: Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life

Abstract

Introduction This study explored pediatric oncology healthcare professionals’ (HCPs) perspectives on direct communication with children with advanced disease about their disease, palliative care, and end‐of‐life (EOL) communication. Methods Forty‐six pediatric oncologists, nurses, psychosocial team members, and other HCPs from six hospital centers in Israel participated in semi‐structured interviews. The Grounded Theory method was used. Data were analyzed line‐by‐line with codes and categories developed inductively from participants’ narratives. Results HCPs viewed communication about disease progression and EOL as vital because children were often aware of their prognosis, because lack of communication could lead to emotional distress, and because communication is a prerequisite for shared decision‐making. HCPs identified several barriers for communication including HCP barriers (such as emotional strains, lack of training), parental barriers, guardianship law, and language and culture. HCPs also described strategies to promote EOL communication. Direct strategies include tailoring communication, allowing for silence, echoing children's questions, giving information gradually, and answering direct questions honestly. Indirect strategies included encouraging parents to talk to their children and teamwork with colleagues. Conclusions Open communication with children who have cancer is essential. Nevertheless, multiple barriers persist. The rising accessibility of online information calls for urgent training of HCPs in communication so that children will not turn to unmediated and potentially misleading information online in the absence of HCP communication. Evidence‐based effective communication training modules and emotional support should be offered to HCPs. Knowledge about children's development, age‐appropriate communication, and cultural sensitivity should be included in this training.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives

“…Participants described having deeply honest discussions about hopes, fears, and relationships. These findings support using VMC to enhance communication about EoL preferences, adding to the existing literature on the myriad benefits of such interventions ( Feraco et al, 2016 ; Lin et al, 2020 ; Laronne et al, 2021 ).…”

Data_Sheet_1.pdf

“…Participants described having deeply honest discussions about hopes, fears, and relationships. These findings support using VMC to enhance communication about EoL preferences, adding to the existing literature on the myriad benefits of such interventions (Feraco et al, 2016;Lin et al, 2020;Laronne et al, 2021).…”

Psychotherapeutic approaches: hopefully, globally effective

“…A second example involves parents who have a child in grade school or above who is dying but who do not want their child to know this (36)(37)(38). They may have, again, understandable reasons.…”