October 23, 2014
Regarding: MS: 1036239018137429
Article Type: Research Study
Title: Cultural Adaptation of a Shared Decision-Making Tool with Aboriginal Women: A
Qualitative Study
Authors: Janet Jull, Audrey Giles, Minwaashin Lodge - The Aboriginal Women’s Support
Centre, Yvonne Boyer, Dawn Stacey
Dear Ms. Pura,
In response to your correspondence of September 22nd, the following issues have been addressed
in response to the editorial request; further comments aimed at strengthening this paper for
publication with your journal are welcomed.
Kind Regards,
Janet Jull
1. This is a useful paper in a field that is
very much in need of this kind of work. I
think that the themes identified in the
results section are strong and resonate with
themes that have been identified in some of
the exploratory work others have been
doing in this area.
1a.Thank you for these comments.
2a. The major challenge I identified when
reading through the paper is a need for
further clarity and a more thorough
application of the reference “post-colonial
theory”. For example, in the introduction
the author comments on the clash of values
that can undermine the relevance of
“western” healthcare models –however in
my mind a critical post-colonial theory lens
would recognize that there is more than
values at stake here – there are
sophisticated and diverse knowledge
systems and practices.
2a.The paper has been revised to reflect
changes in response to this comment; the
introduction (pages 5-7) has had additional text
to explain and acknowledge the significance of
values, which inform the established and
diverse knowledge systems and practices of
Aboriginal Peoples, and to ensure that
structured decision making is not assumed to
be unique to Western cultures.
The emphasis on postcolonial theory and the
role of this theory in the disruption of colonial
forces within health systems is emphasized (p
8-10). In addition, throughout the introduction,
additional clarity about Western informed (or
mainstream) health systems is emphasized as a
way of acknowledging the existence of other,
diverse, health systems.
2b.This superficial application of a critical
lens is further exemplified later on in the
discussion when the first sentence states:
“The adapted OPDG is the first know
patient decision aid designed by and with
Aboriginal people....” – a statement that
fails to recognize that Indigenous peoples
have sophisticated and diverse systems of
decision support built into their
civilizations already.
2b.The sentence has been revised (p. 19): “The
adapted OPDG is a patient decision aid
designed by and with Aboriginal people aimed
at restructuring approaches to care with
Aboriginal clients in Western health settings;”.
The intent of this statement was not to
undermine the existence of systems of decision
support within Aboriginal communities, but to
focus on the significance of a group of
Aboriginal women deciding to reorganize an
SDM approach and which has potential to
influence power structures within Western
health systems that currently exist between
health care provider and client. This is of
particular significance as other, similar work
has not yet been published by any other
client/health system user group.
2c. I think an important point is missed
here – my read of the results is that in
addition to the need to substantively
reshape the SDM tool there question has
been raised re is this tool at all appropriate
or do we need to look at what systems
already exist in the community and build
from that.
2c. Thank you, we agree that this should, be
explored within further study of SDM with
Aboriginal Peoples. In our study women were
offered the option of rejecting the OPDG
during the focus groups and/or of modifying it
in any way they wanted; all of the participants
indicated that they were interested in working
with it and with modifying it, which resulted
in its current form (the adapted OPDG with
coaching).
2d. The participants raise a very important
issue that I believe is rooted in Indigenous
knowledge systems and it is the notion of
relationality and the idea that the who of
the message is at least as important as the
2d. We agree, and also believe that this should
be emphasized. Another paper that we wrote
(under review at the International Journal of
Indigenous Health, and referred to on page 5)
does emphasize that relationality is a key
feature of SDM for Aboriginal women.
what of the message.
2e. Agreed; thank you for this comment;
2e. Another important discussion point in
reference to this weakness is indicated on page
my mind would be this issue of
5, and again on page 24.
relationality and the importance of the
coach and how the Indigenous study
participants have actually raised a
weakness in the mainstream SDM literature
– a need to think about the coach.
3a. If we recognize that in fact this paper is
bringing a “Western tool” to an Indigenous
context (something that from a postcolonial lens needs to at least be
acknowledged as something that usually
doesn’t work well and in fact can be
perceived as a colonial approach) then
there is a critical need in my mind to be
very specific in a qualitative paper about
the location of the researcher with respect
to knowledge systems – if one imagines a
continuum between a naturalistic
Indigenous community perspective and a
“Western” approach where is first author
(who designed the study and analyzed and
interpreted the data) located?
3a. We agree and have added detail on the
position of the researcher, with the advisory
group and community partner, Minwaashin
Lodge (p. 7-8).
3b. From where on this continuum does the
author wish to understand the study
subject? How does the location of the
author help/hinder the desired “postcolonial analysis”. How is iteration with
the advisory committee and participants
specifically and repeatedly used to support
the rigour of the study?
3b. Please see above. Detail on the iterative
approach within the study is described in
procedure (Figure 1).
3c. Are how Indigenous understandings
and approaches to health and wellbeing
incorporated or not incorporated into the
study at all levels (ie these could but don’t
always include for example: the
3c. Detail on how Indigenous approaches to
health and well being are incorporated into the
ethical framework and the original study
protocol, which was developed in collaboration
with Minwaashin Lodge and referred to in this
foundational notions of relationality,
preferences for oral versus written
communication, the importance of who is
delivering the message/information, the
valuing of experiential knowledge).
paper (page 11): “The study protocol provides
details on the study partnership and the ways in
which Aboriginal understandings of health and
well being were incorporated into the original
design of the study, and was published a
priori”.
4a. When words like “evidence” are used
(ie page 6 first sentence, second paragraph)
what kind of evidence is being referred to?
4a. The use of the word “evidence” has been
clarified on page 5: “Evidence derived from
studies conducted with Aboriginal Peoples
about SDM in health care settings is limited”.
As well, the text of the paper has been
reviewed and changed to correct for
assumptions about the dominance of Western
culture.
5a. We agree with this comment and additional
explanation about theory has been added (p. 810) and is aimed at describing these theories
and the rationale for inclusion of each for the
study, including their areas of similarity.
5a. In the theory section I would
recommend an explicit discussion of how
the two frameworks (Ottawa decision
support framework) and postcolonial
theory are aligned and not aligned (in
keeping with this theme of a more thorough
application of a post colonial lens). Getting
at the underlying synergies and tensions in
these two knowledge systems is at the crux
of the challenge this study is attempting to
address.
6a. In the methods – again clarification is
required regarding from what perspective
the data will be viewed and how the author
will achieve this perspective – for me a
post colonial frame often means that I try
to understand phenomenon/qualitative data
as much as possible according to the
conceptual systems and experiences of the
Indigenous people who are sharing them –
I don’t’ understand enough about the
location and lens for this study from the
language “interpretive descriptive”
qualitative study design and the reference
for this method does not appear to be
Indigenously derived so I need further
information to support the claim that this
method is aligned with post-colonial
6a. Additional detail on interpretive description
has been added to explain how this method is
aligned with the use of a post-colonial
theoretical lens on page 10.
theory.
6b. I need more specifics re how the
advisory council for the study would
support a decolonizing Indigenous
perspective and more specifics on how the
research agenda was “respectful of the
diverse needs of a population of Inuit, First
Nations, and Metis women”. For example –
was there a research agreement or MOU?
What benefits were there for the
community from this study?
6b. Additional text on page 10 -11identifies the
published protocol for details on the
background work prior to study
implementation (an open access link is
available in the references); as well, the MOU,
ethical framework, and function of the advisory
group are described in the procedure diagram
(figure 1). The benefits identified by the
community are also identified in the protocol
and for this study specifically described (p. 8):
“Minwaashin Lodge leaders viewed this study
as of potential benefit to its community of
women and children, both as an opportunity to
talk about experiences of importance to them
and to potentially contribute to influence health
care systems”.
6c. Similarly more detail is needed in the
data analysis section regarding the lens
being used and the specifics of
iteration/member checking with the
participants/advisory council. Was
confirmation of the adapted OPDG
achieved in a separate session or in the
final focus group?
6c. The procedure has been revised and
additional detail in the procedure diagram
added (Figure 1) with details on the iterative
process involving the advisory group and the
participant roles. This diagram clearly shows
the steps involved in the focus group
adaptations, which were followed by the
usability testing and final confirmation of the
adapted OPDG with coaching.
7. Minor Essential Revisions
7a. I would suggest changing the language
“lower health literacy version|” to a more
accessible version of the OPDG that made
fewer assumptions about complex English
reading and comprehension skills.
7a. The text of the document has been
reviewed for the use of more strengths-based
language, and this description has been used in
the text. While we are in agreement with
describing the adapted OPDG as more
accessible, it is also a tool which not only made
fewer assumptions about complex English
reading and comprehension. but also a tool to
be used to facilitate the significant interactional
and critical thinking skills possessed by the
participant of our study, as well as changing
the nature of the interaction between health
provider and client.
7b. I would recommend that the author
look at the expanding literature on
Indigenous literature including the
Rainbow or Ningwakwe model of health
literacy by Ningwakwe Priscilla George.
7b. Thank you - this framework has been
referred to in the text described in the text, and
its potential contributions in support of literacy
noted.
7c. I would also recommend that the author
look at the Indigenous knowledge
translation literature.
7c. The Indigenous knowledge translation literature
has been reviewed and was considered during the
revisions of this paper.