Environmental Engineering Reference
In-Depth Information
4.4
Informed Consent
We experienced problems with getting consent forms signed as prescribed by the
UWC ethics committee. The consent forms were alienating, incomprehensible and
full of 'legalese'. They were accompanied by a full-page information sheet describ-
ing the project. Even when fi rst translated into SASL by an interpreter, the Deaf
participant typically took the sheets home. It was very diffi cult to retrieve them
signed. By the time of Mutemwa and Tucker's work (
2010
), we rendered the infor-
mation sheet and consent form in point form and translated each point into
SASL. This was a huge improvement in terms of Deaf participant understanding,
and consent was collected visually with video recording and was much more natural
for them. This illustrates how such problems, as identifi ed by Sterling and
Rangaswamy (
2010
), can be easily overcome (see Sect.
2.3
). In our view, informed
consent forms are often about 'ticking' boxes. We take the position that participants
should have relevant information, communicated to them in their preferred lan-
guage, in order to ensure that they do not feel they are being exploited.
4.5
Satisfi cing Feedback
Our method of ICT development is based on cycles of training, intervention, col-
lecting feedback and refl ection. The collection of objective and useful feedback
remains problematic as one can safely assume that participants will satisfi ce
answers, i.e. tell the researchers what they think the researcher wants to hear (related
to issues covered in Sect.
2.1
). There are ways to triangulate data to identify satisfi cing,
e.g. we can instrument software to collect usage or performance metrics and then
compare that data to answers collected with questionnaires, structured interviews
and focus groups.
During the most recent round of feedback collection on the SignSupport app at a
mock pharmacy, no actual medication was dispensed or used by Deaf patients. Does
this have an effect on the objectivity and completeness of the feedback voiced by
Deaf and pharmacist participants? This is not easy to address.
This brings up the question: is feedback on prototypes enough to drive a project
forward, e.g. SignSupport? While some participants voiced some concerns, the
results of feedback from the latest SignSupport trial in a mock pharmacy (Motlhabi
et al.
2013b
) indicate that SignSupport should be trialled next at an actual pharmacy.
To some, this may be construed as weak participation (see Sect.
2.2
and Fig.
10.1
).
Even though together with the Deaf community we envisioned how SignSupport
could become a tool of empowerment, at this stage, we are still in feedback mode.
The transition to empowerment will only come when the research project moves out
of the mock pharmacy into an actual pharmacy and from there into some sort of
sustainable, if not commercial, operation.
One way we have identifi ed to help 'spread the word' more widely is to also
move from dealing only with DCCT staff to the wider Deaf community. Fortunately
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