Is communication guidance mistaken? Qualitative study of parent–oncologist communication in childhood cancer

Abstract

Background:Guidance encourages oncologists to engage patients and relatives in discussing the emotions that accompany cancer diagnosis and treatment. We investigated the perspectives of parents of children with leukaemia on the role of paediatric oncologists in such discussion.Methods:Qualitative study comprising 33 audio-recorded parent–oncologist consultations and semi-structured interviews with 67 parents during the year following diagnosis.Results:Consultations soon after the diagnosis were largely devoid of overt discussion of parental emotion. Interviewed parents did not describe a need for such discussion. They spoke of being comforted by oncologists' clinical focus, by the biomedical information they provided and by their calmness and constancy. When we explicitly asked parents 1 year later about the oncologists' role in emotional support, they overwhelmingly told us that they did not want to discuss their feelings with oncologists. They wanted to preserve the oncologists' focus on their child's clinical care, deprecated anything that diverted from this and spoke of the value of boundaries in the parent–oncologist relationship.Conclusion:Parents were usually comforted by oncologists, but this was not achieved in the way suggested by communication guidance. Communication guidance would benefit from an enhanced understanding of how emotional support is experienced by those who rely on it.

Improving Communication in Adolescent Cancer Care: A Multiperspective Study

“…Information sharing and clear communication are top priorities for patients . No group of participants thought it important that doctors deal with the emotions of patients, which corresponds with the results of a recent study on parents of children with cancer: most parents did not want to discuss their feelings with the oncologist, despite guidelines that encourage oncologists to engage patients in discussion about their emotions . Our multiperspective data show that good communication by nurses overlaps with the therapeutic alliance, the collaborative bond between provider and patient (and in our case parent), characterized by trust and respect .…”

“…The American consensus statement on continuing education promotes communication skills and specifically addresses training for professionals in pediatric and adult oncology, but not for adolescents. When communication guidelines exist, they are often based on experts’ values and not on an assessment of the experience of all individuals in the clinical encounter . Training can improve professional communication skills in oncology, but it must be based on training guidelines that take adolescent and parental needs into account, as well as those of health care workers.…”

Parent‐centered communication at time of pediatric cancer diagnosis: A systematic review

“…Overall, studies suggest that parents are often conflicted between dealing with grief and processing medical information . Studies described emotional turmoil (e.g., feelings of grief, fear, and anxiety), which limited their ability to retain information . In general, parents appreciated having a medical provider who was sensitive to their needs, able to empathize with their emotional burden, and able to adjust the pace of the diagnostic consultation accordingly …”

“…Studies described emotional turmoil (e.g., feelings of grief, fear, and anxiety), which limited their ability to retain information . In general, parents appreciated having a medical provider who was sensitive to their needs, able to empathize with their emotional burden, and able to adjust the pace of the diagnostic consultation accordingly I'd say the only thing is just trying to retain everything with the fog that you're in from being hit with [the diagnosis] …”

Cancer care in Romania: challenges and pitfalls of children's and adolescents' multifaceted involvement

“…This does not reflect a denial of patients' right to information, as patients were gradually involved in care, even in the absence of full disclosure for some. This finding highlights the grey zone of how to professionally and empathically disclose diagnosis to families and children 17. The degree of involvement desired by patients is difficult to assess especially when parents and oncologists take an adult-centric view and exclude child participation from what they consider difficult situations 2 18…”