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Well thank you so much Jennifer and thank you all for attending today. I've never felt
so isolated and speaking to as vast an audience as possible than I probably have ever and
also felt so isolated at the same time. So I'm just going to assume everybody can hear
me okay and carry forward talking to the screen here. So thank you all so much for coming
to speak today and thank you Jennifer for inviting me to share some of the work we're
doing out of the psychosocial oncology lab at York University. And as Jennifer mentioned,
I'm also a clinical psychologist with the Odette Cancer Centre at the Sunnybrook Health
Sciences Centre in their patient and family support program. And just to say again as
you know that who's in the audience just to give you a little bit of background information
about me. I have been working in the field of really studying couples in cancer for well
now close to 15 years for as long I've actually been working with the patient population and
their caregivers. And the project that I'm going to be speaking to you about today is
someway a culmination of a lot of the earlier work that I did looking at the impact of cancer
broadly on couple adjustment. I worked or studied couples affected by prostate cancer
initially and then went on to do similar qualitative research with couples affected by breast cancer.
So this is actually focused on breast cancer and an online intervention that was developed
for that. So without further adieu...
...I'll talk about the intervention. It's actually called Couplelinks.ca and it's basically
the way you can think about this is a self-management program but it supports self-management or
facilitates self-management. So I'll describe how each couple undertakes the program in
a minute but this is basically our flyer that is distributed to health care professionals
across Canada. We're still recruiting for this so it's a national. And before I go on
to talk about the different phases of the project...
...I just want to acknowledge how things all began back in 2008. There was the first phase
which really was the development and pilot testing of the web interface and the online
interface which was extensive pilot work and web construction. I've never actually ventured
into this area at all. But like many of us who think it'd be really great to be able
to disseminate our work and to reach underserved populations through the internet, we find
ourselves in this zone working with website developers suddenly. And that in itself is
always a learning curve. So that went on for a few years where we were really working out
the kinks. And getting a lot of formulative evaluative feedback from our participants
and having an advisory committee comprised of couples who've been through breast cancer
and also stakeholders in the community who were familiar with this population can work
closely with younger women in particular which is what we were aiming to reach with this
intervention. And then we're currently in the Phase II of the project which is the randomized
trial which has pretty much been going on since 2010. And I'll be speaking a little
bit about some of the preliminary findings from that as well. So I'd like to just walk
you through the development product testing and where we're at with the trial today and
to give you a sense of, a good feeling for the intervention itself.
I'd like to recognize our research team. Without your support and involvement and ingenuity
and organizational capability, this would never be happening. So there's Saunia Ahmad
who's a post-doctoral fellow with the project, Amanda Pereira who's our research coordinator
extraordinaire as anyone who's done online research knows. We really are so reliant on
the people who are coordinating and managing all of the various components of this virtual
world. Without that, they are the glue and Amanda is our glue. So is Saunia actually.
And then we have our co-investigators from the trial and many of whom who are also on
the pilot investigation. So there's Joanne Stephen and Deborah McLeod joining us from
the BC Cancer Agency. Deborah is from QEII in Halifax. Sandra Gardner is a biostatistician
who we're very fortunate to be having had for so long working on this project even though
she's gone on to do *** work now, that's her focus. Ellen Warner who in addition to just
being an incredible supporter for psychosocial oncology, in general, has a wonderful knack
for coming up with titles and names. I have to attribute, credit for the Couple Links
title to Ellen Warner. So she's great with play on words but also Ellen has also been
from the very beginning involved in the project. Jill Taylor-Brown has recently joined as a
co-investigator and if you will know Jill, she's not out there herself. And then we also
have some incredible facilitators who are really breaking ground in relation to what
this role is. It's a very unique role, it's a novel role about how do you facilitate couples
through this workshop type of experience. And so Jim Panchaud who's one of the Regional
Cancer Centres part of private practice right now but he's been very instrumental in defining
this role as a clinical psychologist. And the first Couplelinks facilitator.
So again why do we originally focus on young women? And by the way we have since the flyer
I showed you is 50 years and younger, we were in the early stages we really tried 40 years
and younger but we've expanded our recruitment because as I like to say as we get older,
as our research team gets older, the definition of young gets older too. So we thought that
many of the issues were applicable to women in their early and mid 40's as well so we
just thought to make it a bit more simple and to increase recruitment for the project,
we actually expanded our if you will. So why focus on young women and their partners? Again
I'm assuming in this audience are very familiar with the detrajectorialization that occurs
with younger women and the additional stressors that entails. But I will just review those
right now. So Grace Newgarden wonderful insight into 'off-time' ness and why really this illness
is occurring at a time in life and these individuals and these couples, their plans for the future,
their lives, just getting off the ground really in terms of establishing families, their careers,
themselves and that next stage of life and soon they're hit with this diagnosis. And
so we borrowed that off-timeliness and additional stressors associated with a crisis that would
be a crisis any point in life. But when it occurs with the time that is least expected,
it's that much harder. Also that premature confrontation with mortality. Again, these
women the last thing they would be expecting would be having to look towards their potential
or shortened life span. And again that is not something they're expecting in their 30's,
someone as late as their early 20's. Sudden onset, premature menopause we're all aware
is more difficult than a more gradual menopause and of course that comes with loss of fertility.
Premature menopause in itself has its own health risk. Cardiovascular risks, osteoporosis
but then there's this dreadful loss of fertility or I like to think of it as interrupted fertility.
So women who didn't have children, they will that of course be impaired and ceded. And
if they wanted to have more children, that is also disrupted and of course they initially
will be putting that child-bearing task if you will or goal on hold for the duration
of treatment which is usually 5 years. And then beyond that, including hormonal therapy
and then beyond that of course they're also subjected to the concerns whether they're
founded or not are still I think a scientific question, it seems like it's tilting towards
it doesn't increase risk of recurrence if you do have children after breast cancer diagnosis
but nevertheless it's a concern, it's an ongoing concern for women. And also you know along
the lines of with couples as well that they'll be less interested sexuality and that portion
of the relationship is disrupted by treatment. Women are preoccupied and there are concerns
about body image and just not feeling good in their bodies. It's not going to be a time
for heightened *** activity within the couple. And the couple is also perhaps going
from you know a step down in terms of frequency perhaps would be greater for a younger couple
than it would be for a couple older than earlier stage of life. And then there's the body image
and dating concerns. Concerns for young children which are both practical and existential.
So suddenly young mothers will be having to consider where they'll be when their children
graduate from high school, will they be here at their wedding, ones the average young woman
will be thinking about. And also the practical constraints. The early career disruptions,
so practically it's not uncommon to have women juggling their own treatment with their children's
dental appointments, parent-teacher meetings, all those things- who's going to take care
of my child while I'm in treatment. Additionally, there are disruptions, they feel robbed of
age appropriate goals and expectations for themselves and of course it doesn't help when
everyone around you is realizing those age appropriate goals and expectations. So the
social comparison component is large and just having such complex reactions they have to
experience in relation to their family. I've just lost my slide. Bear with me a second.
So and just generally feeling sideline and isolated. And so for all these reasons, we
thought that it would be helpful because of course for everything the woman is going through
and if she's in a long-term relationship or committed relationship, the partner will also
be subjected to these things as well. And so for all these reasons, I'm just forwarding...
...these slides yeah. So the rationale being that the needs are quite high, why we developed
a program that we explain it to you is really very cognitive limitations on time for the
couples and we really also considered not all couples want to come in for face-to-face
counselling even if they feel they could benefit from it. And we thought that online modality
would allow for great flexibility, comfort and convenience.
So just to give you a sense of what the actual interface looks like. So here is the most
recent version of the platform and we have a number of video clips here. We have one
of our pilot study couples who very generously donated their story and they're basically
their story is woven throughout the website. The facilitator has a little introductory
video, the Wendy Carter there.
And the objective of our study initially was to develop and test an intervention and the
intervention was to basically educate couples about what the challenges are associated with
breast cancer at a young age and strategies for helping to deal with these. To normalize
the couples' experiences in relation to breast cancer at a young age and to strengthen the
couple bond and their ability to cope as a dyadic entity so this is borrowing from Bodenmann's
work where they really have applied the construct of dyadic coping and extended the concepts
from to include the dyadic unit. So we've really drawn on that literature as well. And
then really to strengthen the intimacy and closeness that the couples share, their capacity
for mutual empathy and understanding. So really the theoretical strain is an interactional
one, it's not only about supporting the woman who's ill but also how does the woman's coping
affect the partner's and how does the health plan of the woman herself also benefit or
support the partner, including their communication skills and relationship knowledge. And also
some work is being done now meaning-making and the importance of meaning-making as a
couple in relation to breast cancer and the crisis or trauma the couple has been through.
What I want to just emphasize here is that what we are attempting to achieve is not so
much making cancer the focus, which is often the case in couples-based interventions for
cancer-related stress. What the assumption of this intervention is that by virtue of
strengthening that dyadic bond in the couple as a unit, they will be better prepared to
face adversity in general and certainly breast cancer in particular. So really that is the
emphasis in this project but we do weave in obviously specifics in relation to coping
with breast cancer and as a younger couple.
So what does the intervention entail? It's hard sometimes because no one will go, if
you say cognitive behavioural therapy people will know what we're talking about. But when
we say Couplelinks, no one will understand that. So basically the way you can speak or
think about this is an online couples workshop that couples enroll in one couple at a time.
So it's not like a course, it is like a course in the one sense because it is comprised of
lessons if you will. But on the other hand, sequentially, delivered lessons. But on the
other hand, it's very customized to the individual and each couple is guided through the project
one couple per facilitator. So they don't know of the other couples who are participating
but there will be other couples participating simultaneously. It's what I coined or talked
about as experiential psycho-education. So in addition to readings and videos that really
have to do with coping with cancer as a young couple, remember we're not trying to reinvent
the wheel here. We'll want great resources for coping with breast cancer in general but
not necessarily as much around couples at least when we first were developing the website.
So that's really the focus of our sort of static or informational material. But we also
have videos as well and also there are the core videos: 6 experiential exercises which
is what I think of the experiential psych-education component. Essentially the couple undertakes
these on a weekly basis, one at a time and they're really drawing on the positive psychology
literature so the first one for example is celebrating their strengths as a couple and
how do these strengths actually improve or allow them to cope as well as possible with
the illness and the treatment effects and the disruption to their lives. So celebrating
their strength would be an example of their first module. And they then report back to
the facilitator on what they're learning and I'll explain this in a second. So it is facilitated
by a mental health professional. As I said earlier this is would be considered supportive
self-management if you will. And they really speak regularly with their facilitator through
what's essentially a discussion board, what we call a "Dialogue Room" on the website.
This is an asynchronous form of support so the couple basically completes an exercise
and the facilitator responds to the couples' experiences and the feedback the couple provides
about the experiences with the particular exercise or what we call dyadic learning module.
We wanted the website to be easy to use and engaging and also to adapt to the...
...couples' busy schedules and to not to be too taxing or onus in terms of their time.
So this is just to give you a sense of the various exercises so they are "Understanding
their Partner's Inner World" would be the second week. We ask that the couples take
these on once a week basically in reality, one to two weeks and of course there are vacations
and things like that that interfere. So "Facing Cancer as a Unified Front"...
...is the meaning-making exercise. I just want to share with you some of the things
that this is going on, this work . And we basically translated that into a web version
of what she does with couples face to face which has helped them develop a shared metaphor
or narrative actually for the couples and we actually walk them through a series of
steps that allow them to come up with a statement. In this case it's a pseudonym but we say David's
cancer is a like a detour because it was an unforeseen path that we had to take in order
to get back to where we left off, it was a detour with many ups and downs and at some
points we felt lost, but we had each other to keep us strong. And then again there's
a rate of expression kind of exercise and the couples can upload images and things like
that to help them define, really in a nutshell, how this has impacted them. And this is also
working again theoretically some of the work that I've done with David Reed about externalizing
the couples' or in this case the illness. It's also making meaning of it and it is a
big, I love this for its sarcasm and poignancy but just to give you a sense of how these
couples' perceive this illness, it really is a major boulder in their path and it's
also on their road of life we're not expecting.
So the couples log into the website and everyone has their password protected entry...
...and the whole website is encrypted and no one can enter in here unless you're invited
to be here and you're properly screened and you're either a facilitator or a couple who's
going through the program. And here they are accessing the different modules so this particular
couple at this point in time is looking at this "Understanding your Partner's Inner World"
module. They're about to undertake it.
And they'll click on begin, it'll take them into the homepage for that particular module
and again will be speaking to a theme that's relevant to the module. The module will be
how to find the module will be explained and the couple is basically be guided through
each step along the way. And you'll notice that some of these components are done together
so John & Jane do it as a unit or shared time in front of the computer or on their own or
together. And there'll be other components where they'll be undertaking it on their own.
And this is my own, this is coming right out of my own psyche I guess. My need for organization
whether it actually manifests is another question but this is really just so that the couple
can see in advance what every module will entail and it'll allow them to manage their
time as well as possible. And then once they complete a particular component, it actually
automatically gets checked off in the lesson tracker which is like a passport to Coupleslinks.
Again just being conscious of how busy these couples' lives are and the management of them,
allowing them to manage their time as well as possible these would be the program.
And then they also are asked to provide feedback on the activity. And this particular one is
what the couples have called the newlywed game. It starts off with more trivial kinds
of considerations where independently the couple will answer questions about what their
own preferences are or likes/dislikes are. So the question might be, "What's your favourite
drink?", "Who's your least favourite in-law?", "Who's your partner's least favourite in-law?"
At the end of the exercise, the couple sits down together and reviews this and we do get
progressively more specific to cancer and coping with cancer. So another example would
be "What my partner most would like from me when I'm feeling down?" and "What I would
most like from my partner is x and y". And then the computer program transforms their
input, their data essentially into a table that then the couple reflects on together
so you can actually see what I think my partner needs from me vs. what they actually or want
or need from me. And often times, couples are quite accurate and they get a kick out
of that. And there are other times where there are discrepancies and this allows the couple
to just iron out those discrepancies and discuss them in dialogue around them in a way that
we hope is constructive. And again that's the whole point of this is really we're trying
to always funnel the couple in the direction of having a constructive interaction in relation
to their experience. And this particular module is also just drawing on this idea that we
have are these relationships that each of us hold about those that are close to us and
including our partner's but those can get disrupted, or modified or changed when we're
in crisis. Situation we're in, anxiety provokes a situation. A women for example who's normally
autonomous and likes to be independent and strong may not be feeling that strong and
may be feeling more and want something differently from their partner than she might want in
other times in their life together when they've experienced stress. So this is allowing us
to make sure those relations schemes are more synchronized and accurate.
And then the couple as I said provides feedback and then the facilitator will dialogue and
provide a message back. And these messages are very, we're learning, very artfully and
with great care constructed in such a way and we're actually in a process of analyzing
these messages. Because the way these facilitators take their time and they're very focused in
their responses and they're really clear that these are not everyday kind of chit chat responses
or even just cheering them on kind of responses. There's a lot of therapeutic skill and experiences
really condensed into each of the reactions or feedback that the facilitators are giving
to the couple. And they're finding them really useful. And this is what allows us to take
a generic program and customize it to the individual couple and to each individual partner.
So in Phase I, lots of development and pilot testing. We had 10 couples who completed all
6 modules. Again it was targeting non-metastatic couples so disease stage (I-III). At any stage
of treatment, we were quite open and we continued to be open in terms of disease stage and they
generally had well-educated sample. Majority were married or engaged, I think we had one
couple in the pilot who were living apart but still in a committed relationship. And
half had children.
Just to give you a sense of why these couples are even agreeing to participate. Helping
others was number 1. Strengthening their relationship, wanting to grow together through the project,
through the program. The partner often the male would say, "because she wanted me to".
To learn how to support my partner better, resolve relationship issues, learn coping
skills in relation to breast cancer. Those are...
...the main reasons for participating. Just to give you some examples of the women were
hoping for what was the motivation to do this. "I feel that there are still so many questions
that I have that are unanswered that I am hoping this study might help. Maybe by participating
it will help other young people in the future. Help me and my boyfriend talk about some issues."
Another women said "To aid other couples," again we see this altruistic motivation here
quite pronounced "there was a large gap for young breast cancer connections while I was
ill. My partner and I also are finding ways to cope with such a major life event at the
beginning of our relationship." So again younger couples have generally younger relationships,
although 10 years on average is not that long, mind you it is not that long. But still for
some, I facilitated a couple where the woman actually learned her lump was cancerous the
day before her wedding. So you can't get much more close to the beginning of a relationship
than that.
For the male participants again, really quite extraordinary in terms of what's motivating
them to be a part of this. "To make sure I'm aware of all my fiancée's needs and fears,
and learn/understand how I can help her, and be the person she needs me to be. To share
my personal thoughts and feelings about her health and what we're going through." And
by the way, we are getting that feedback again quite loud and clear that the men are very
even now where we're seeing more resources for young women which is wonderful, the men
often feel like their needs not are- they'll never admit to this but we get the feedback.
And no one ever actually asks us how we're feeling and nobody ever really focused on
that maybe we're are having some challenges in relation to coping. So they actually find
it very helpful to know that their side of the equation is being acknowledged at minimum.
The fact that we're creating this intervention for both partners and then hopefully beyond
that, helping them to better understand or work through whatever is challenging for the
men in particular. Another male participant says very I think poetically, "Cancer is like
a living presence in a relationship and it affects both spouses and your relationship.
I thought we could benefit in assistance in dealing with this stressful situation and
to help our relationships 'weather' the storm."
These are some of the reasons why couples were motivated to join. And so on the pilot
study, pretty good overall satisfaction in relation to just overall participation, the
program convenience has and we'll continue to see the least endorsed or strongly thought
of rating and I'll explain that in a minute. Facilitator helpfulness is often the strongest;
really couples are so appreciative of our facilitators and I think they really come
to form a kind of a bond. Again getting back to our interest in therapeutic alliance that
can be shaped through an online modality.
The website is easy and navigate. Again pretty good ratings even at the pilot stage. So we're
still collecting that data, obviously it'll be a part of our randomized trials as well.
We're still interested in knowing what the couples are, how they're finding the website
and are our own improvements even better than were initially. And so just to give you an
example of when it's a little bit more than mediocre reception. One of the women participants
said, "I don't feel that the program achieved what I intended but it did provide us with
opportunities for discussion and a chance to reminisce. Perhaps we didn't put the amount
of effort necessary to help us grow closer together. Or maybe we're as close as we'll
ever be." Again that kind of comment I think really speaks to 'yeah this is not intensive
intervention and nor is it intended to be. But what we are consistently getting feedback
from couples is that what it's doing is that it's creating a space context to carve out,
helping them carve out plans and talk about some of these things that either will get
the stuck under the rug because that's just their way of coping with things or they really
just genuinely don't have time to focus on this stuff. So they really are carving out
that space and time to talk about something that was so significant and has been significant
and has long-term impact on the couple moving forward. "I thought that the questions and
scenarios were very relevant to what I have gone through with my husband during this breast
cancer journey." You know again just endorsing that it was worth their while, gave it a 4/5.
An example of a 5/5,"The program taught us a lot about ourselves and our relationship.
I think it brought us closer together." Of course that's music to the research team's
ears...
...but it's a whole range here of reaction. And the convenience again, why is it not so
convenient? Well, "We have very limited free time available and found it difficult to finish
the lessons within a week, particularly the ones that needed to be started immediately".
Another couple found it disruptive to their normal routine. Inconvenience and then you
know, some of the couples really appreciated the fact that the deadlines were somewhat
flexible and that they could do the tasks when they wanted. Again one participant found
it that they could access and do the exercises anywhere anytime. So a whole range but really
it's not considered to be convenient because it really does interfere like I totally understand
this participant who says they rather snuggle up on the couch and watch a T.V. show at the
end of the day of work. Don't we all?
So you can see where they're coming from. What was the most valuable thing you learned?
And just for the sake of time, I'll let you read these out to yourselves here. But really
just again that time to stop and reflect. Re-learning something new, that despite his
always positive attitude and he's scared too. So how great that that came out because so
often we spouses who are trying to be that strong base for their partner but it's not
always necessarily the best way to share, necessarily promote closeness. So great that
kind of thing comes out.
What have we learned about facilitating couples through at online intervention. Well humbly
speaking, we've learned that Couplelinks is not the centre of the couple's world! And
I love how has this wonderful expression or she likes to say this in relation to her own
work where she talks about how you know we can please some of the people, all of the
time and all of the people, some of the time, but we can't please all of the people, all
of the time. And that's fair to say in each of the pre-determined...
...interventions. And in a way it's a light intervention. And we are in a way trying to
customize it to some degree. And there's all sorts of barriers for you to work through
in relation to the pilot testing. The technical glitches, there was only an issue where only
the (32:31 indistinct) correspondents and the asynchronous communication. We know that
it's easier to avoid and distance using online technology than it is face-to-face. Couples
wanted more on sexuality so that's changed, I'll explain that too so we've included a
physical module in a lovely title which Joanne Stephen came up with. And that by the way
is not full out sex, it's really again that sort of gentle intervention just guiding them
through a sense of focused exercise and just helping them establish that stepping stone
to reconnecting sexually because it's often as we know disruptive. Leniency around timelines
wasn't necessarily a good thing and we'll talk about that. Not "intense" or "profound"
enough as I mentioned and the more tailored it can be, the better. Lag times were an issue
with facilitator getting right back- we found that's easier to, there's a wonderful metaphor
of stickiness in relation to web-based interventions and facilitators play a large role in the
extent to which that stickiness is experienced. "Intentional Dialogue" so this is an example
of not being able to be all the people all of the time.
It's such a split, rather controversial module. Just to give you an example. This is a by
the way very structured discussion, going on with Hendrix's work is having that more
skilled kind of way of communicating about a difficult topic. And couples are given essentially
instructional videos on this. One couple said," We didn't resolve anything. It just made us
feel awkward. We couldn't wait until the end of the exercise so we could actually talk
about the subject of the conversation in a meaningful way." And on the other hand, we
had another male participant say, "This was the most beneficial part of the whole program
so far, actually teaching us how to communicate. It started some interesting discussions."
And he learned a lot about his wife through this, incorporation of this tool.
So this now has actually become an optional module based on the facilitator's clinical
judgement of whether or not the couple might benefit from this. Ongoing treatments are
issue, extremely busy lives, I'm not going to emphasize that enough. But here's a quote,
"This is nothing against the program," just she's working throughout, going to treatments,
she's volunteering, taking on too much in general. And so yeah it's not going to be
that conducive to getting through this as necessary.
Sometimes one partner is more motivated than the other. That is an issue. Unpredictability
of the disease. Once again we all know this but again it's just other always...
...fluctuating variable work. We're constantly working around this in relation to negotiating
deadlines for thess modules to be completed. So just an example, "Sorry for the delay but
we have had a bit of a fright. My wife found a lump on her neck which is a swollen lymph
node and had an ultra sound, at which point the doctors decided that a biopsy is best.
It looks suspicious. We are very worried as you can imagine and this is a priority right
now. Touch base with us in a week or two and we'll let you know how." So just again, really
getting a sense of how much these couples are dealing with and how much we try to parachute
into their lives with this intervention, what we're actually navigating along.
So again we've done a number of things in Phase II to improve adherence and engagement.
We're really assessing motivation of both participants in the beginning. Multiple channels
of regular communication so now we've actually instituted- this is by the way supported other
non-cancer couple interventions online- is that the more we can include some kind of
actual verbal voice connection in addition to web-based communication is very helpful
so we has included that as well. Again it also humanizes the facilitation in a much
greater way. Clarity and emphasis around due dates. And really being clear about our expectations
of the couples, knowing their time commitment entering into the program, the upcoming module
so there's a lot of advanced preparation of these couples and really encouraging them
to talk to us even if they're not finding it helpful. Again built in to this protocol
now is a degree of flexibility. Some couples just really don't like that creative visualization
or creative expression exercise. This whole feeling that we want them to tell us that
and it is within the protocol to opt out of a module or two if it's just not really part
of their thing. And again that's supported by the literature- the more customization,
the better.
And as I said "Intentional Dialogue" is now an optional module. We have that sexuality
module. Joanne has this wonderful phrase, "Friendly yet firm" approach to facilitation.
So getting that feedback that you know our facilitator was great but she could have pushed
us just a little bit more and we wouldn't have been offended. So that really gave us
positive we can be a little bit more demanding and we have actually taken to that approach
in our adherence as improved. And I should mention of the 10 that's we had, 6 other couples
took on the pilot phase and eventually didn't sustain. So some of them drop out after 2,
I think we had a couple make it to 4, so not all couples will finding this something that
they wanted to do. So we took that lesson. And then of course, we weren't able to interview
those couples because they sort of dropped off and had the questionnaire. But we also
were able to consider each individual case and what it was that interfered with their
ability to benefit from the program.
And certainly really respond to the couple ASAP. And this is again this is actually the
response from the. This is actually one of our RCT couples so more recent couple where
the partner says just to emphasize how important that responsivity is and as the facilitator
is. So that's another kind of message being sent. It's a process message of you matter
and I'm on top of your work in this program. So this is the perception of one of our participants
who says, "I was always shocked by how fast she responded, which is a good thing, like
in this day and age. I send enough emails to enough people in the day and don't get
responses, whereas she would respond almost like, we would have a respond almost right
away in some cases, so it was really good because it showed she cared, which I think
really made a difference in this case, because like I said, I send enough emails in my day
and don't get responses." And he says, "we didn't feel like just a number." So important
point.
So now Phase II. This is funded by Canadian Breast Cancer Alliance and the Canadian Breast
Cancer Foundation. We now have facilitation manual that is guiding the training and supporting
the ongoing development of all of our facilitators. And we currently have 54 couples at different
stages in the program or who have been randomized to the wait-list control group.
So pretty much 50/50 right now in terms of waitlisted and in treatment group. And by
the way, any couple that is waitlisted is welcome to take the treatment or go through
the program after they've completed that. And we do have some couples who do that. Average
length of this relationship. And it's interesting, well it makes sense actually, we have expanded
the entry criteria beyond 45 to 50. So you'll note that the average age of participants
is slightly older. It was 35 for the women, now it's in the 40's. And the range is obviously
more great as well.
Breakdown in terms of where our couples are coming from. The most recruitment is occurring
from Ontario but we have representation from across Canada. We're really hoping to increase
with the inclusion of the Manitoba site more recruitment from Manitoba and anyways we've
got pretty good representation. And so we are still recruiting so please let me know
if you have people in mind who you think might benefit.
And then just to again we're getting the homogenous sample of our ethnicity.
And again highly educated sample for the most part or educated sample I should say.
And we have just to give you a little bit of a flash of the baseline data of these 50
so far. So obviously we're assessing one of our primary outcomes is relationship adjustment.
Actually our primary outcome is that coping as couples for the Bodenmann's measure that
we're using but our secondary interests are obviously in relation to. We have two measures
of that: Revised Dyadic Adjustment Scale and Kansas Martial Satisfaction Survey.
And so for those people who are interested. I mean, we are getting couples who are not
necessarily distressed in the clinical set as compared to couples in the general population
but we also are. So it's not they're maybe adjusting to the treatment and that's motivating
them. I'm sure the nondistressed couples but we are getting couples who are also clinically
distressed. And 40-30% is not insignificant.
And in terms of the depression rating for this sample so far. Again pretty, not depressed...
... but what's interesting is we are seeing some variability in relation to anxiety and
again if that's to be expected and the women are all admitting more to it. I guess it's
not unexpected either. Or maybe they generally are more anxious.
What's interesting in pointing out is there is a relationship between distress levels,
individual distress and relationship quality. And so this is actually helpful to know for
those of us who are interested in couple intervention and justify why these are important. It's
not just improving the quality of the relationship but improving the quality of individual coping.
And this is even more strongly observed for the men in the sample thus far. So I'm aware
wow this is not common for me, to leave some time for discussion. I am at the end of the
slide and I think at this point, Jennifer would be quite fine to open the floor to questions
and I look forward to hearing who's out there. So thank you.
Thank you so much Karen. That was great. What a wonderful intervention.