Investigating next-of-kin’s capacity to give valid consent for research on behalf of a critically unwell loved-one in the context of the intensive care unit

D’Antoni, Donatella (2014). Investigating next-of-kin’s capacity to give valid consent for research on behalf of a critically unwell loved-one in the context of the intensive care unit. University of Birmingham. M.Res.

Preview

Dantoni14MRes.pdf
PDF - Redacted Version
Download (3MB)

Abstract

Background of the main research project presented: Because critical care patients are frequently unable to decide for themselves, researchers have turned to substitute decision makers (SDMs) to obtain consent/assent for medical research. However, many factors may make it hard, if not impossible, for them to make a valid decision (e.g., Burns et al., 2009). This mixed methods study investigated the proportion of SDMs capable of providing valid consent/assent for research involving critical care patients. A secondary research question was what their experience of doing this was like. Methods: Using our adapted version of the UBACC (Jeste et al. 2007), 14 SDMs were assessed for their capacity to provide valid consent for the specific research study they were asked to consider by a critical care research nurse. A second part of the interview explored (using a qualitative design) how the participants made sense of their experience as SDMs.
Results: Twenty one percent of the SDMs were not capable of providing valid consent for research: they did not understand the aim of the medical research nor appreciate the risks and benefits involved. Using thematic analysis, six themes emerged. Clinical researchers should check carefully whether potential participants are capable of providing valid consent.

Type of Work:

Thesis (Masters by Research > M.Res.)

Award Type:

Masters by Research > M.Res.

Supervisor(s):