Ps Ed.

Figure 1: String mapping activity to illustrate where families access research and information in comparison to where researchers disseminate.

go to in order to find the information they were
looking for. The board had 24 suggested sources
(such as: clinician, social worker websites,
books, conferences, etc.) to choose from, and
participants were also encouraged to add new
points in case they didn’t find the ones they
needed. While each family member visualized
their journey using string, the other participants
listened and conversation about these sources
and their value naturally occurred. Researchers
also participated in the string mapping activity.
Using blue string, they mapped the sources
where they typically disseminate their research
and explained their process and rationale for
dissemination. After all participants finished
mapping their personal routes, they were asked
to engage in a group discussion about the pros
and cons of the different points of access [9].

In this activity we were interested in iden-
tifying opportunities through individual nar-
ratives but also in fostering a rapport and
discussion between the groups. Visually, one
could see a striking difference between where
knowledge was being accessed and where it
was being disseminated. For example, research-
ers typically disseminate to academic journals
and conferences, where as families get a lot of
information from other families and online
sources. The string created a useful visual and
kinesthetic task which triggered rich conversa-
tion. What emerged from this activity was anew
framework invaluable for understanding how
the transference of knowledge was taking place.

We caught glimpses into different perspectives
about knowledge acquisition and saw tension as
a result of existing systemic constraints, such as
current research funding models, which do not
inherently support or encourage public dissemi-
nation of information.

Following this, we moved onto an interview-
ing and brainstorming activity which focused on
generating ideas for improved communication
and knowledge exchange in the future. Here
researchers and families were able to create a
collective vision for the future based on an im-
proved understanding of each other’s perspec-
tives and needs. Based on the insights gathered
from these workshops, we developed a series of
design recommendations for the PAFN in order
to improve communication and connect parents
to research, at the right time and in the right
context. The most pertinent proposed outcome
was a web platform which could compliment the
face-to-face services at the PAFN. This would
serve asa digital hub where parents could access
relevant and credible research in a format both
accessible and specific to their individual needs,
connecting them with evidence-based and local-
ized services and resources.

PHASE 3: CO-DESIGN 2017/2018

For the third phase of our collaboration, we
are currently employing a co-design process to
conceptualize a web-platform that will curate
credible research and information for families.
The Helsinki Design Lab defines the practice

of design stewardship as “the art of getting
things done amidst a complex and dynamic
context. Stewardship is a core ability for agents
of change when many minds are involved in
conceiving a course of action, and many hands
in accomplishing it [10]”. The third chapter of
our partnership with the PAFN, which at the time
of this publication is on-going, takes root in this
definition. As we shift from generative research
into designing and implementing, our focus
has expanded beyond the interactions between
ourselves and the specific stakeholders in the
ASD communitytoa larger sphere in which we are
meeting with developers, owners and operators.
We are taking our findings and insights, grown
from our generative design research phases, and
are now striving to concretize a web-platform
concept which can be actualized by the PAFN.
In developing a web platform for the PAFN, we
are interjecting a new platform into an existing
ecosystem of stakeholders and impressing
upon them new ways of communicating. This
is a challenging venture that requires both a top
down and bottom up approach. The Helsinki
Design Lab describes this further: “pressing
‘down’ to induce the creation or adoption of new
means of directly meeting the challenges at
hand, while simultaneously pushing ‘upwards’
to question the assumptions of today’s systems
and create space for redesign [10].” Currently
we are operating in a middle space, navigating
between the desires of the intended audience
and the realities of those who will be in charge

- FH ODO oO DM

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