4 Type, intensity and quality of information given by physicians during the cancer journey of palestinian children with leukaemia: between revelation and concealment

Abstract

Background Despite the accumulation of evidence that supports the importance of giving parents detailed information, there is less evidence to support the notion that providing ‘negative’ information has a harmful effect on both parents and children. This study explored the communication of information across the cancer journeys taken by children from different perspectives in Palestine. This paper reports on the perceptions of the physicians. Methods This study used an ethnographic qualitative case study approach. It was conducted in one oncology unit in one Palestinian hospital and used two data collection methods: participant observation and semi-structured interviews. Results The study generated 70 hours of observation and 35 interviews; physicians (n=5), nurses (n=11), children aged 6–18 (n=6), mothers (n=7) and grandmothers (n=6). The findings demonstrated that physicians were reasonably open with parents at the diagnosis stage; however, as the child’s condition got worse, they concealed negative information to protect parents from emotional suffering. However, despite their tendency to conceal information, they associated revealing information about the child’s deterioration to parents as an important act to protect themselves legally. Furthermore, they generally concealed negative information from children. There seemed to be a close link between the type, intensity and quality of information revealed and the stage of the cancer journey (diagnosis, treatment and prognosis). Conclusions This study of Arab physicians delivering care to children with cancer and their families are positioned at a point in tension where they are reluctant to reveal information about a child’s deterioration and the knowledge that by concealing this information they place themselves in a difficult position. Although concealing information may be explained by cultural context, it does leave a communication gap for children and their parents at a very sensitive time in the child’s cancer journey.