Agency and Communication Challenges in Discussions of Informed Consent in Pediatric Cancer Research

Abstract

In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication. Our goal was to understand how individuals rhetorically constructed agency in discussions of informed consent experiences. After transcribing and coding the focus group interviews, we identified six aspects of agency in participants' discourse: (a) defining roles, (b) seeking information, (c) providing information, (d) supporting others, (e) making decisions, and (f) claiming agency for self. Examining these aspects of agency indicated that efforts to improve the informed consent process must address: (a) status differentials, (b) role definitions, (c) information flow, and (d) relationships.

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

“…15,19,22,35,41 Participants report a desire and a need to alter the pace of interaction in order to gain a place in the discussions and to establish agency.…”

“…Studies report the tailoring and limiting of information to adolescents and parents by HCPs. 19,41 Simon et al 33 report this tailoring with non-English-speaking families in particular, stating clinicians were more likely to omit certain information from discussions with non-English-speaking parents, relating to randomisation, right to withdraw and consent documentation.…”

Ethical issues of clinical trials in paediatric oncology from 2003 to 2013: a systematic review

“…1,26,31,35,40,43,45 Phase 1 trials, often seen as last chance for controlling the disease, and correlative biological studies 23 raise particular issues in this regard; for instance, it is argued that families should be offered the choice to opt for trial participation while refusing correlative (non-beneficial) studies. 46 Hence, offering research participation can have clinical and personal impact, both on patients and parents, either positive (better follow-up, improved self-image or sense of control, "a glimmer of hope") 21,36,[47][48][49] or negative (health insurance coverage, anxiety or remorse, medical futility or broken alliance). 24,26,29,30,32,38,45,50,51 Joey's mother is scared by the deescalation study, anticipating guilt feelings in case of negative results.…”

“…33,43,61,64 Without mentioning other sources of information, 26,30,39 professional communication requires active dialogue and partnership with parents and patient. 19,20,28,31,34,47,49,56,65 Non-hierarchical communication, by privileging open discussions and pedagogy, 20 aims at correcting asymmetries of information (about technical aspects and family preferences). It is deemed efficient to enable decision-making, 1,39 to foster alliance, 21,35,47 and to restore voluntariness by promoting parents' and patients' agency and sense of control.…”

Managing discomfort and developing participation in non-emergency MRI: Children's coping strategies during their first procedure

“…Research shows that children should not be thought of as just 'small adults'; examining children requires both an understanding of their normal variations in anatomy and paediatric pathologies and an awareness of their cognitions, comprehension and communicative capacities. [10,11] Relevant work shows that children value being taken seriously and also that they are very capable of exhibiting informed levels of satisfaction regarding medical care. [12,13] It is therefore important for clinicians to develop the ability to understand children's experience during imaging to provide high-quality care and develop meaningful interactions to improve the examination situation for all involved.…”