(claps)
- Good morning, my name is Agatha Tutia, I also go by Aggie.
This is work for my Master's Degree
in the MHCI+D program at the University of Washington.
I'll be presenting on behalf of my co-authors
on our research on menopause during our capstone project.
For our capstone project, myself, Lan and Kelda,
we dedicated 11 weeks of research to exploring menopause
and later designed a solution within nine weeks.
While we did present a solution for our capstone project,
we decided to solely focus on the research we did
for the CHI case study.
So, why menopause?
Well, we never talked about it.
When we were mind-mapping areas
focusing on women empowerment for our subject matter,
we realized that we didn't know what menopause was,
our mothers never talked about it with us
and it hasn't really been vocalized by public media today,
in the same way that menstruation is.
And we wanted to understand, well why is that?
After all, half of the world's population will go through,
is going through, or has gone through menopause.
In 20 years from now, my team and I will be going through it
and to be honest, we were a bit upset
by our own lack of knowledge
and for the benefit of those who don't know
or haven't experienced it,
I'll be explaining a little bit about what menopause is.
Menopause is the body's permanent end to menstruation.
That means no more period, no more eggs to release,
it's the end of our fertile phase in life.
It also occurs in stages.
When you begin to experience signals,
like your period becoming irregular,
you are in perimenopause.
This typically occurs in your mid- to late-forties.
Once you go without your period for twelve cycles,
you are officially at the menopause point.
Afterwards, you are in post-menopause,
and with higher risk of osteoporosis and heart disease.
Signals can continue forever,
though they typically last up to ten years
and peak around the menopause point.
But just like how every experience is different,
each signals is different, each timeline is different.
It's important to note that menopause
can actually be induced through medical means.
People who have their ovaries surgically removed
immediately enter menopause.
And people who go through chemotherapy
or radiation therapy also transition into menopause
but can return to their fertile phase
after treatment ceases.
Instead of the word symptoms,
we decided to call the effects of menopause signals
because menopause is a natural human transition
and not a disease.
Common signals of menopause include irregular periods,
vaginal dryness, hot flashes, et cetera.
But all kinds of signals can happen in this period of life.
We knew the physical and biological aspects of menopause,
but we needed to explore the personal and emotional
menopausal experience.
And we asked ourselves, what is the menopausal experience
and how do we design for it?
As we began our research, we quickly discovered
only a small selection
of about three to four menopause papers
within the ACM digital library.
At the same time,
the published works only really focused on solutions
and we saw an opportunity for us to share solely
our research findings and contribute what we could
to the community.
After asking Daniella to be our advisor,
she recommended to read more on intimate design.
Our research became heavily impacted by Teresa Alameda et al
at Call to Action for the HCI community
to stop being embarrassed by the sexual parts
and to design more for the intimate spaces.
Along with the lesson from Marie Søndergaard's work
from Intimate Futures,
to respect the body and question the effects
of a technological solution
surrounding intimate experiences.
The more academic lens
led to revising of our research question.
How can we avoid framing menopause as a problem
requiring a single technological response,
and instead how can we, the HCI community,
design for the menopausal experience.
We wanted to share our findings with other researchers
and help de-stigmatize the sexual parts of the body.
We recruited our participants by posting flyers
in various socioeconomic ranging neighborhoods in Seattle,
advertisements on Craigslist and Reddit,
reaching out to various groups on Facebook and Meetup,
and through word of mouth.
We really wanted to avoid a homogeneous sample.
We conducted six semi-structured interviews,
a two and a half hour workshop,
and three final semi-structured interviews
based upon the previous two.
The interviews and workshop were audio recorded,
transcribed and thematically coded and reviewed.
Our sample involved 17 cisgender women,
including seven mothers, six non-Caucasians,
and two women who underwent hysterectomies,
the surgical removal of the uterus.
We had one transgender man who completed one survey,
but after several attempts we were unable to connect
with the individual.
Since menopause is a taboo topic,
we coordinated a workshop to form a safe space
for personal testimonies and natural conversation
to merge about their experiences.
Preparing for the workshop was extremely crucial
to crafting that right energy for our participants.
In preparation, we had nine cisgender women confirmed,
eight showed.
We sent a friendly and clear email prior to the workshop.
I made signs for the door, to the restroom,
name cards, name tags, all in the same
visual design language.
We primed the main walls with six posters:
health, knowledge, public life,
relationships and family, self image and other
for the infinity diagram activity.
Within each theme we posted quotes
from the first round of semi-structures
to allow participants to become more comfortable
with the concept of ideation.
Our first activity, we asked them to write a letter
to their premenopausal self.
We wanted to learn what they would tell themselves
reflectively now that they were experiencing
or have experienced menopause.
We then had the women, if they wanted to,
to read out loud their letters to break the ice
and get conversation going.
We told them that they could write on Post-It notes
during the focus group, anything that stood out to them,
to put on the posters later
while the researchers did the same.
After the break, the participants wrote their observations
about menopause on Post-It notes,
worked in pairs to organize the notes into groupings,
and then each chose a note that they would like to
see change for themselves,
or a note that they would like to
see change for the community.
From our first insight, we noted that because menopause
is a stigmatized topic,
our participants encountered a culture of silence
that limited their exposure to the menopausal experience
and made them feel emotionally
and practically under-prepared.
During the workshop, Lucy, a Vietnamese immigrant,
shared a story about her mother,
who had an adverse reaction to hormone replacement therapy,
a treatment meant to ease the transition.
"She was bleeding out of the blue after not having a period.
She thought she was dying and went to the ER.
My sister and I started bawling on the phone
that mom is dying...And that was it. Never discussed again.
[Mom] went home. That's it. 'I'm fine.'"
While she wasn't able to break the silence within her family
and struggles with connecting with her own group of friends,
Lucy is being proactive today by taking classes
with her teenage daughter so that they can both
better understand their bodies
and keep history from repeating.
In our second insight, we saw that participants
describe experiencing a fluctuating loss of control
over their bodies.
In the photo you can see a Post-It that says
"I feel like I'm going crazy."
which was a common phrase said by our participants
when they were experiencing signals like hot flashes
or being overwhelmed with emotions.
But they didn't know that what they were experiencing
was menopause and they couldn't truly
attribute it to anything.
Others, when they did know that they were in menopause
were simply annoyed by their signals
while having a generally positive mindset.
From our third insight, we learned that participants
found the effects of non-induced menopause
as deeply intertwined with wider attitudes
and understandings around aging.
In non-induced menopause
aging and menopause are concurring.
Biological changes that occur while aging
are also happening when you're going through menopause.
This can make it difficult for people
to assign their signals to aging or to menopause.
At the same time, participants expressed experiencing
discrimination from being an older woman.
One participant explained "You become invisible."
In our final insight, we saw that participants responses
to the end of menstruation consisted of a range of emotions
from relief to regret.
On one end of the spectrum, people were glad to be done
with menstruation and not having to pay
for tampons or pads anymore.
But on the other hand, it can be more sensitive.
One cancer survivor who had her ovaries removed,
thus inducing menopause,
recalled the surgery as one of the most difficult decisions
she ever had to make during this entire journey.
She had hoped to have children one day.
It's important to know that there are people who revel
in the end of menstruation
and too people that mourn the end of their fertility.
Overall, we looked at how the menopausal experience
actually has a wide range of challenges
that requires a wide range of solutions.
And to be understanding of the physical and emotional
transition that occurs from perimenopause
through post-menopause.
Concluding our case study into menopause,
we hope our research encourages and variety of designs
for the variety of experiences that is menopause
and the aging body.
For instance, a smart bra that cools you down
during a hot flash.
Maybe it's an interactive story map,
or a personalized guide to your specific signals
throughout your journey.
We also see the need for additional research,
with transgender populations, global perspectives,
and induced menopause groups.
We need to do more and I believe that we can do more.
It's 2019 y'all.
(laughter)
I would like to thank our participants
and everyone that supported us
in humanizing this experience.
I look forward to seeing how menopause and HCI
impacts the world.
I am interested in future collaborations
and seeking PhD programs that align with these values.
I'll now be taking questions.
(applause)
- [Host] So can I ask if anybody does have a question?
Okay then it's my fun part (mumbles)
(both laugh)
I think it's a very interesting study.
I'm gonna be honest, it looked a little bit corporate
when you had the set up for your workshop
so did you do anything to break the ice during that
'cause it looked very nicely set up,
perfectly set up and I was thinking,
like you said very well at the start,
it's quite a personal subject to bring up
so how did you get people to relax a little bit.
- We had a little table of a lot of different foods
and we brought in our personal mugs.
We also thought about where we positioned ourselves
in the very beginning so we had someone at the door,
always watching.
We had people greeting people while they're waiting,
and introducing, helping them get set up,
giving their name tags
and just getting some conversation flowing.
So we were already primed to just start talking.
(audience)
- [Woman] Hi, I'm Lousia. Thank you for your great talk.
It was super interesting to hear
and I look forward to read the paper.
I have a lot of questions, but one of them is that
I've heard more menopause talks here at CHI
and they are all trying to critique their solutions.
They come up with different solutions
and they feel like these solutions
are stigmatizing menopause even more,
so there seems to be this kind of resist
to actually design for menopausal experiences
because they are stigmatizing the experience
and you cannot design a universal solution
for menopausal women, right?
So I was wondering on your reflections on these proposals
that you have in the paper
of different designs you could make,
then why you didn't choose to make any of them?
- For the capstone project, we actually ended up
creating a solution,
it's just not talked about in the paper.
I will say after talking to the different women,
there's definitely a need and a desire for solutions.
There's a Facebook group that I'm a part of,
of just 30,000 menopausal women
and you can just see that
they're trying to get more information,
they're trying to learn more,
so there's these pockets of different types of needs
I definitely believe there should be
some sort of community
or there should be some more design solutions for it.
And I think that's probably going to be with co-design,
I think having the women in charge
of what is it that can help me better
go through this transition is definitely there.
- [Man] Hi, thank you. Yes, enjoyed the talk a lot as well.
My name's Joel Rexby from Northumbria University.
I was just wondering if you could say a little bit more
about what you meant by intersectional recruitment
and maybe explain how you went about that
and perhaps comment on whether recruitment is particularly
difficult in this area,
and do you have any advice for recruiting women
to talk on this subject?
- Okay, I'll try to break that down.
Intersectional is making sure that you're not,
it's just a wide-ranging population.
So you're having people who are trans,
you're having people who are different races
and different cultures.
So I guess it's just that lens of there's feminism
and then there's intersectional feminism.
So it's a lens to really continue forward in that direction.
When we were recruiting, it was difficult
because Seattle is a bit more a white population
but we were aware of the different neighborhoods
that we could access more ranging populations.
I think it's just a matter of trying to be proactive
with who you're talking to and being aware
of the word of mouth, sometimes that happens.
Or whenever you're recruiting from your college populations,
I think developing relationships with different communities,
reaching out to churches.
For one of the participant, who was the Vietnamese immigrant
I reached out to a church group.
And so you're getting these different cultures
and different groups that you can try to get to.
It was really hard and I think we could have done more,
but I think that's a part of it,
just continuing to grow in that.
(applause)