Abstract
Objective
Research indicates that health personnel (HP) caring for seriously ill patients with dependent children aged 0-18 often avoid discussing with them the challenges of being a family with a parent in treatment. Children of seriously ill patients (CSIP) risk serious trauma and emotional difficulty later in life and depend on adult support to minimize these consequences. Patients suffer anxiety about supporting their children during their illness. Due to their potentially pivotal role in supporting patients in enabling parent-child communication, we examined HP's structural and emotional barriers to communicating with patients about their children.
Methods
The study was based on 49 semi-structured, in-depth interviews with doctors and nurses working with haematology, gynaecological cancer and neurointensive care. Both interviews and analysis addressed emotional and structural barriers, drawing on the theoretical framework of Maturana's domains.
Results
The study found structural barriers (e.g. lack of space in the medical recording system, professional code, time pressure and lack of training) and emotional barriers (e.g. the painful nature of the situation and the perceived need of keeping professional distance). We found that emotional barriers tended to grow when structural barriers were not addressed.
Conclusions
Our study indicates a) the need to use templates and manual procedures to gather and process information about children in medical records; b) the need for managerial backing for CSIP and time spent on it, c) the need for future HP training programmes to include how to implement procedures and how to address all barriers.
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