Communication about diagnosis and medical treatment for children suffering from life-threatening illnesses is complex. It is a primary step in involving underage patients and families in care and lays the foundation for obtaining parental permission and patient assent for treatment. In practice child participation in care is often difficult to obtain due to patients' different and sometimes fluctuating preferences, but also parents' protective strategies. Physicians may be susceptible to parental wishes to limit information and feel uncomfortable discussing issues related to uncertainty of cure with patients. A qualitative study in Romanian paediatric oncology units was conducted to explore children's involvement from the perspectives of parents and oncologists. Interviews with participants discussed 18 patient cases. Data were transcribed and thematic analysis was used to interpret and mine patients' involvement during treatment. Different facets of patient participation were identified: restricting, widening and enhancing involvement. A fourth category, unintentional involvement, occurred for all patients due to children's observations during long-term hospitalisations and access to Internet. Uncertainty overarched parental attitudes regarding the extent to which children should be included. Physicians usually complied with parental wishes to limit involvement, but together with parents involved patients at least in a practical way. Adults' protective attitude may backfire, as adolescents' online searches often expose patients to worse-case scenarios. Further research should acknowledge the hazards of restricted diagnosis disclosure and develop clinician tools to support families in communicating with patients. This should be paralleled by physician efforts to elicit patients' needs regarding participation.
- Clinical Ethics
- Minors/Parental Consent
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Contributors DOB is the first author and wrote the first draft of the manuscript. All stated authors participated significantly in the conception and design of the manuscript, drafted the article or revised it critically for important intellectual content. The manuscript was read and approved by all authors.
Funding The authors acknowledge the financial support provided by the Botnar Grant of the University of Basel and the HEMMI-Stiftung, Basel, Switzerland. EDC's work has been supported through a Swiss National Science Foundation grant (National Research Programme 67 ‘End of Life’, 406740_139283/1), as well as the Stay on Track support from the University of Basel.
Competing interests None declared.
Ethics Approval The conduct of this study was first approved by the leading ethics committee at the researcher's institution (Ethikkommission beider Basel EKBB, No. 51/12), as well as from the institutional ethics committees at every study centre in Romania (from 12.12.2012, No. 19295/09.11.2012 and No. 12781/27.09.2012).
Provenance and peer review Not commissioned; externally peer reviewed.
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