Endo Empowered by Kate Bennett

ENDO EMPOWERED Using Human-Centered Design to Improve the Daily Lives of People with Endometriosis.

By Kate Bennett

Contents Glossary

Abstract

Context

Framing

Methods

Reflection

Proposition

Timeline

References

Glossary Endometriosis / Endo

“The abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus. Endometriosis is most commonly found on other organs of the pelvis” (Medicine Net N. Pag.).

Chronic Illness

“An illness that lasts 3 months or more... cannot be prevented by vaccines or cured by medication, nor do they just disappear” (Medicine Net N. pag.).

UX Design

Service Design LGBTQ+

Autoethnography Co-Design

“User experience (UX) design is the process of creating products that provide meaningful and relevant experiences to users. This involves the design of the entire process of acquiring and integrating the product, including aspects of branding, design, usability, and function” (The Interaction Design Association N. pag.). “The activity of planning and organizing people, infrastructure, communication and material components of a service in order to improve its quality and the interaction between service provider and customers” (Service Design Network N. pag.). “An acronym for Lesbian, Gay, Bisexual, Trans, Queer/Questioning, and others. It refers to a population of people united by having gender identities or sexual orientations that differ from the heterosexual and cisgender majority” (University of Central Florida N. pag.). “An approach to research and writing that seeks to describe and systematically analyze personal experience in order to understand cultural experience” (Ellis et. al N. pag.). Enabling “a wide range of people to make a creative contribution in the formulation and solution of a problem”(Design for Europe N. pag.). 5

Endometriosis is a disease of many illnesses..

“A disease that is surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments, and a lack of awareness – overlaid on a wide variety of symptoms that embody a stubborn, frustrating and chronic condition.” (Hummelshoj 779).

I am a Human-Centered Designer exploring how UX Design can educate, support and empower people with endometriosis. 8

ABSTRACT

Endometriosis affects 1 in 10 women but chances are you don’t even know what it is. (Hummelshoj 779; Bush et al. 453; Grundstrom et al. 205). Endometriosis is when tissue from inside the uterus grows outside the uterus. This causes inflammation and pain, damages internal organs, and can have a negative impact on all aspects of an individual’s life (Grundstrom et al. 206; Seear 195). With a variety of painful symptoms, a difficult diagnosis and no known cause, endometriosis is a common yet debilitating disease, with no cure (Hummelshoj 781; Hudson et al. 722; Wheelan 957; Facchin et al. 1859; Seear 202).

Long waitlists to see specialist doctors mean that people with a chronic illness only spend an average of 3 hours a year with their doctor (McDonald 1). The rest of the time they are left to learn about and manage the illness on their own. The lack of research about endometriosis has resulted in a lot of conflicting information that can be overwhelming to the patient (Seear 45). Without the information, support and resources that they need, endometriosis sufferers feel confused, frustrated and isolated.

Tangled up in a world of menstrual stigma, reproductive rights, and gender expectations; endometriosis is both a physical disease and a feminist issue (Jones 1110). Many women feel too much shame about their bodies to ask for help, and when finally reaching out, many women are trivialised and told they are overreacting (Cox et al. 2; Jones 1086).

My project aims to support the everyday lives of people with endometriosis; to help them feel understood, validated and empowered. I will use UX design as it is accessible to my digitally native target audience (Schippers N. pag.; Meyer N. pag.; Kim N. pag.), and motion graphics as they are effective at engaging users and are easily shared across social media (French N. pag.). This will educate sufferers about the illness, give them tools to help manage their pain, and connect them to a support network.

My personal experience with endometriosis allowed me to use autoethnography as a starting point. I analysed and reflected upon my own experience with endometriosis and compared this to the experiences of others through interviews and group discussions. Using frameworks of inclusive design, and human-centered design to guide my research, I gained insight into how culture and context can create varying experiences with the illness. Because of this, I am using co-design throughout my project to ensure that I meet the needs of real people with endometriosis. This requires empathy, as “human-centered design is premised on empathy, on the idea that the people you’re designing for are your roadmap to innovative solutions” (IDEO 22).

I aim to foster a sense of mental and physical wellbeing, empowerment, and self-love in endometriosis sufferers, while being inclusive in my design to support those who were once excluded from the conversation about women’s health (e.g LGBTQ+ community). I hope that giving people the tools they need to manage their illness will improve their daily lives and break down the barriers of women’s health. This will facilitate an inclusive conversation that removes the archaic stigma of menstruation.

The Down-Low on Endo

What is endometriosis?

What causes it?

Endometriosis is when the type of tissue that normally lines the uterus (endometrium) grows outside the uterus, often covering ovaries, bowels and sometimes even spreading to the lungs. Usually, this lining is shed from the uterus as a period, however, when it is located somewhere else, it is unable to exit the body. Consequently, it swells, bleeds, spreads and damages the internal organs, causing immense pain and nausea. This can have a detrimental effect on an individualâ&#x20AC;&#x2122;s mental and physical health. (Faccin et al. 1856; Grundstorm et al. 206)

There is no known cause of endometriosis, however many theories believe that genetics can play a part in it; you are more likely to have endometriosis if your mother or sister has it too. (Bush N. pag.).

CONTEXT

What are the symptoms?

How is it diagnosed?

How do you treat it?

Pain with periods, pelvic cramps, pain during sex, bloating, diarrhoea, constipation, pain with bowel movements, painful wind, sub-fertility or infertility, tiredness, back pain, PMS, abnormal bleeding, and bladder problems are all symptoms of endometriosis (Bush N. pag.).

“Due to the menstruation-like symptoms, endometriosis is often normalised and trivialised, both by healthcare professionals and by the women themselves, leading to diagnostic delay” (Grundström et al. 206) It takes on average 7-8 years from the time a women experiences “abnormal pain” until they are diagnosed with endometriosis due to the lack of research and awareness on the illness (Hummelshoj 781). The majority of the time, endometriosis won’t show up on ultrasounds and pelvic exams, so the only way to know if an individual has it is usually by invasive surgery (Bush N. Pag.). Because of this, women are often misdiagnosed with illnesses like urinary tract infections or irritable bowel syndrome (Hummelshoj 781). It often takes multiple doctors and specialists before a woman is taken seriously about experiencing symptoms of endometriosis (Hummelshoj 781; Bush N. Pag.).

There is no cure for endometriosis. It can be treated by laparoscopic surgery, which is when a surgeon cuts key-hole slits into the pelvic region and cuts out the endometriosis (Bush N. pag.). This may reduce the pain of patients once they are healed, but it does not prevent endometriosis from growing again, therefore many patients have multiple surgeries for endometriosis (Bush N. pag.). Most women are prescribed a contraceptive pill or IUD as hormonal treatment for endometriosis as it is seen to slow its rate of growth and lower the pain. It also acts as a way for women to reduce the heaviness or completely stop their periods as this is usually the most painful time of the month for endometriosis sufferers (Bush N. pag.). Other than this, women are mostly prescribed anti-inflammatories and other painkillers which can be detrimental as long term solutions (Bush N. pag.). Diet and lifestyle changes have been proven as the most sustainable way to lessen the symptoms of endometriosis (Bush N. pag.).

Stigma sucks, Period. The stigma of menstrual health renders endometriosis as both a healthcare and a feminist issue.

In a world where tampons are taxed as luxury items, and girls carry them up their sleeves to avoid revealing that they are on their periods, the stigma of menstrual health renders endometriosis as both a healthcare and a feminist issue (Jones 558; Pulitzer 8). This stigma means that many women don’t realise that the symptoms they are experiencing aren’t normal, as they have no way to converse about menstrual health (Pulitzer 8). Consequently, many girls suffer for years before getting the help they need, because of the shame they carry about their bodies (Jones 1086; Pulitzer 8). When finally reaching out for help, many women are brushed aside by doctors and told that their pain is not real, so they must seek legitimization in order to get the help they need (Jones 1084). Rupi Kuar combats this stigma through her photo series seen in figure 1, where she is shown with blood on her sweat pants. The fact that this was banned from instagram twice is evidence that even in 21st century western society, women are still being shamed for this natural process (Saul N. pag.). Jenna Weibe, creator of “Duvet Days,” is a sexual assault survivor who uses illustration as a tool to combat stigma. She creates awareness and support while promoting self-love and self-discovery to those affected by rape and domestic abuse (Weibe N. pag). Like Wiebe, I also aim to channel my own experience as motivation to create change, and provide support to others by connecting the areas of healthcare and design. Facilitating a meaningful conversation about menstrual health is key to allowing women with endometriosis to get the help and support they need.

ISSUE Figure 1: (Above) Kuar, Rupi. “Period.” rupikuar.com, N.D. http://rupikuar.com Figure 2: (Left) Weibe, Jenna. “Endometriosis Anatomy” Duvet Days, N.D. http://duvetdays.org

Wellbeing for the “unwell” Less than 5% of people with a chronic illness define themselves as having good wellbeing (Mackay et al. 22).

Wellbeing is defined as “the state of being comfortable, healthy, or happy” (Cambridge Dictionary N. pag.). It has become a buzzword thrown around by companies who often don’t consider the fact that wellbeing isn’t something that can be designed, as it is defined differently to everyone (Buchanan N. pag). To me, wellbeing is feeling comfortable in yourself, living the life you want to be living, and feeling loved and supported by those around you. I aim to create these feelings through design, so that people who may not be physically well are doing all that they can to help themselves. Giving the patient the tools they need to live a better day-to-day life may improve their wellbeing (McDonald 12) Wellbeing relies on more than just an individual but the communities they are a part of, as wellbeing lies in the space between people, places and interactions (Buchanan N. Pag.; Van de Poel N. Pag.). Creating better communities can foster positive wellbeing, which can result in better physical health (Cooper et. al 76; Ohrnberger et. al 42). Therefore it is crucial to consider wellbeing when designing for those chronic illness, as it may help to reduce their symptoms. These elements fit closely with the Hauora model, a Māori philosophy of health that depicts wellbeing like pillars of a whare. All pillars must be supported in order to keep it strong (Te Kete Ipurangi N. pag). “Evidence suggests that if people perceive health promotion messages as portraying something too distant from their own lives, they will be resistant” (Mental Health Foundation 4). Therefore using everyday analogies rather than medical terms, and placing my project into a New Zealand context, will enable accessibility. Alongside this, the Haora model reminds me that I must focus on supporting all areas of an individual’s wellbeing in order to help manage their illness.

ISSUE

PHYSICAL A personâ&#x20AC;&#x2122;s physical environment and how they use their body can affect their wellbeing.

PSYCHOLOGICAL Wellbeing is more than just mental health; having positive emotional and psychological support can also foster a positive wellbeing.

SOCIAL Connecting with others and being a part of a community has been proven to improve an individualâ&#x20AC;&#x2122;s wellbeing.

ECOLOGICAL We have evolved to live in nature. Being outdoors and connecting with the environment has a positive effect on our wellbeing, positivity, health and empathy.

Auto ethnography “Auto-ethnography... expands and opens up a wider lens on the world...influences interpretations of what we study, how we study it, and what we say about our topic.” (Ellis et al. N. Pag.)

As I personally suffer from endometriosis, I have strong empathy with my target audience. This allows me to reflect on how my own experience shapes the way I view the illness and what I, as a patient, need in order to support myself. Comparing my ethnographic research to my primary and secondary research has allowed me to analyse how my own experience compares to others. After my first surgery for endometriosis and throughout the research period, I did a lot of sketching as a way to record, and take my mind off the pain. I find that drawing is a key part of both my design and coping process; using my subconscious mind and drawing how I feel helps me to process thoughts and generate ideas. Utilising the users’ creativity as a way to deal with pain could be explored throughout my project.

Although I have empathy with my users from shared experience, I only understand the illness through my own lens of the world. When designing, I must consider how I can be inclusive and support the variety of needs held by individuals rather than just myself.

METHODS

UTERUS

OV AR Y

Y OVAR

ENDO

VAGINA

Figure 3: (Top Left) Bennett, Kate. “The View After Surgery” 2016 Figure 4: (Top Right) Bennett, Kate. “I am more than my illness” 2018 Figure 5: (Bottom Left) Bennett, Kate. “Post surgery painting” 2015 Figure 6: (Bottom Right) Bennett, Kate. “Tracing over surgery scans” 2018

My Endo Journey

METHODS

Figure 7: Bennett, Kate. â&#x20AC;&#x153;My Endo Journey.â&#x20AC;? 2018.

I mapped my journey with endometriosis from getting my first period right up until doing this project. This helped me to reflect on what I was thinking and feeling at each pain point. This was a good way to begin thinking about how design could make this journey easier.

Co-design & Empathy “Empathy is the capacity to step into other people’s shoes, to understand their lives, and start to solve problems from their perspectives.” (IDEO 22)

I have reached out to others with endometriosis in order to build empathy. I spoke to friends and colleagues who suffered from the illness, and others from New Zealand-based support groups on Facebook. This allowed me to gain insight from those whose lives are different from my own. Using the principles of co-design and empathy, I was able to generate ideas and draw connections between experiences. I did this through one-on-one interviews, online surveys, and group brainstorming sessions. This helped to facilitate an understanding of patients’ needs and how design could be implemented to improve a patient’s journey with endometriosis. As I also suffer from endometriosis, participants felt comfortable opening up to me about their experiences. This could have been a potential barrier if I didn’t have the illness, as it is hard to communicate struggles with those who don’t understand. This made me realise that it is important to help the close circles of sufferers gain

an understanding of the illness, so that they can provide support. I found that although endometriosis has very similar symptoms among people, the way that these are addressed and dealt with is largely based on the individual’s context, such as upbringing, culture, ethnicity, gender, sexuality, and class. I must consider these things when designing and ensure that my solution can fit the needs of a variety of people. One of my key insights was that menstrual stigma is a large barrier to getting help for endometriosis. Many women I spoke to grew up in an environment where they couldn’t openly talk about their periods, and because of this, they didn’t know that what they were experiencing was abnormal. Throughout my project I will look at ways that I can reduce menstrual stigma, and allow people to gain help in a way that they feel comfortable.

METHODS Figure 8: Bennett, Kate. “Co-Design: Felicity’s Journey” 2018. Figure 9: Bennett, Kate. “Co-Design: Marine’s Journey” 2018.

Co-designed E

METHODS

Endo Timeline

Working with a range of endometriosis sufferers ages 18-30 we collaboratively created a timeline of our experiences with endometriosis.

Human-Centered Design “Human-centered design offers problem solvers of any stripe a chance to... create innovative new solutions rooted in people’s actual needs.” (IDEO 9)

Human-centered design is the idea that the end user holds the solution to the problems that they face, and therefore should be involved throughout the design process (IDEO 9). This can be achieved by designers building empathy with their users through observations, conversations and utilising the users’ creativity. Human-centered design is underpinned by the belief that everyone is creative, they just need to be given the tools to solve problems (IDEO 19). IDEO is a global design and innovation company renowned for effectively using design to improve the lives of others. Because of this, I have used IDEO’s “Field Guide to Human-Centered Design” as a framework to guide me through my research process. IDEO breaks the design process down into inspiration, ideation, and implementation (IDEO 11).

I will follow this when creating my project and involve the user through each task. Human-centered design is crucial in the healthcare environment, because the people creating the resources and services, have not usually experienced what their patients are going through (Kouprie and Visser 438). Using empathy and involving the end user in the design process, ensures that design solutions fit the true needs of the user. (Kouprie and Visser 438).

METHODS

INSPIRATION I have researched about endometriosis in the healthcare environment and interviewed people to find out what their needs are as patients. I found out that the majority of patientâ&#x20AC;&#x2122;s time is spent managing the illness from home, therefore, patients need better resources that enable self-care.

IDEATION I have brainstormed with patients to come up with solutions for the problems they face. Patients informed me that they would benefit from a resource they could use onthe-go to track their symptoms and gain insights from them.

IMPLEMENTATION I will user-test my creations with users in order to ensure that they are addressing their needs. I will do this throughout the entire design process.

Existing Resources

Other sufferers and I analysed the existing resources for endometriosis to discover their positives and negatives, and how we would improve them to better suit our needs. Overall we found that there were a lot of gaps in the resources and there was no singular resource that catered for all the needs of an endometriosis sufferer. Having to look at multiple resources on a variety of platforms is time consuming, conflicting and confusing for the patient. Many of the resources were very gendered and heteronormative, with a focus around fertility rather than helping the individual. Some resources even made light of the situation by trying to find humour within endometriosis. This simply trivialised our pain. We came to the conclusion that an inclusive resource that not only educates the user about the illness and helps them talk to their doctors, but also gives people the tools they need to manage their pain from home would be the most successful outcome. There is no existing resource that does this. 26

REFLECTION Figure 10: BioWink GmbH. “Clue App Screens” 2013. Figure 11: Endometriosis New Zealand. “All About Me Resources.” Accessed 2018. Figure 12: Speak Endo “Homepage” Accessed 2018.

Key Insights Although there is a lack of awareness around endometriosis, patients felt they would benefit more from a resource that supports them with their illness rather than more knowledge from society about it (anecdotal evidence). This resource may give them the skills to talk about their illness from their own perspective, and therefore, raise a more authentic awareness within their own communities. The stigma of periods results in a lack of conversation around womenâ&#x20AC;&#x2122;s health. (Jones 1086; Pulitzer 8) Using design to facilitate conversation around menstrual health may allow people to get the help they need. Patients spend little time with their health care professional. The majority of the time they are having to manage their own illness from home. If they are not given the tools they need to self-manage then they risk feeling isolated and abandoned (Mcdonald 12). Design could be implemented to create a singular resource that targets all the needs of an endometriosis patient. The current model of healthcare services disengages patients from having agency over their experience, and doesnâ&#x20AC;&#x2122;t give patients the every-day support that they need (Mcdonald 9). Human-centered design could be implemented to give patients the control they need over their illness. 28

REFLECTION 77% of patients with a chronic illness felt they could manage their illness from home but lacked the resources to do so. (Mcdonald 17). Design could be implemented to create effective resources utilising modern technology. Giving patients the power and knowledge to control and manage their own illness will result in empowerment. Research shows that empowering patients can lead to better health (Mcdonald 11). 61% of patients surveyed said they would benefit from advice from other patients. Behavioural studies show that we are more likely to be open to receiving information from people we perceive as being like us. (Mcdonald 27). Design is an effective tool for connecting people, it should be utilised.

How Might Human-Centered Design Educate, Support and Empower Those with Endometriosis to Improve Their Daily Lives? I will explore this through UX Design, Motion Graphics and Illustration.

REFLECTION Figure 13: Bennett, Kate. “Project Zeitgeist” 2018.

PROPOSITION

Project Aims 1.

2. 3.

4. 5.

Help people realise when they are experiencing abnormal pain, what the symptoms of endometriosis are, and how they can get help if they think they might have it. Foster a sense of mental and physical wellbeing, empowerment and self love.

Support the everyday lives of endometriosis sufferers by giving them tips to manage pain, track their symptoms and gain insight on lifestyle changes that might work for them. Help endometriosis sufferers feel supported, understood and validated.

Be inclusive in my design so that it is appropriate for people who were once excluded from the conversation of womenâ&#x20AC;&#x2122;s health. (e.g the LGBTQ+ community, those who are infertile or not sexually active).

Intention

As there is no cure to endometriosis, the only relief comes from managing the illness day-to-day (Seear 202). By utilizing my research in co-creation, human-centered design and UX design, I will create a resource that makes managing illness a delightful and mindful experience. My resource will attempt to improve the daily lives of endometriosis sufferers by helping them understand their illness and how it affects their body. This will allow better communication of what they are experiencing with their healthcare professionals and loved ones, so that they can gain the support that they need.

PROPOSITION

How will my design address..

The 5 ways to Wellbeing Give Users will be encouraged to give time towards looking after themselves which will develop self-love.

Be Active Learn how to use exercise as a tool to relieve symptoms.

Keep Learning

Educate users about endometriosis so they can become experts of their illness and have a better understanding of their bodies.

Take Notice Tracking symptoms will help users take notice of what effects them and be able to make lifestyle changes because of it.

Connect With other sufferers and learn tips and tricks off one another, so that no one has to suffer alone. Having a network of people who are like you, and understand you, can foster positive wellbeing.

Touchpoints Motion-graphic Motion graphics are an effective tool for storytelling and building empathy. They are eye catching and can communicate and disseminate information in an accessible and delightful way (French N. Pag.). They are easily shared on social media which can act as a way of raising awareness within society as well as specifically targeting those who might have the illness. I will create a motion graphic that will give a basic rundown of what endometriosis is and what to do if you think you might have it. It will talk about the benefits of tracking your health, and that you donâ&#x20AC;&#x2122;t have to struggle alone if you join our community. This will onboard people to the app.

Website Websites allow people to access and navigate through information in a simple yet effective way (Gunawan N. Pag.). This will allow people to know more about the cause and see otherâ&#x20AC;&#x2122;s stories before they commit to downloading the app. The website will help onboard users to the app, but can also be used as an alternative for those who are just seeking information.

Business Card I will create a business card-sized resource for doctors and nurses to give patients to onboard them to the app. Currently, doctors give patients brochures explaining their illness. Brochures often try to communicate too much information in a small space which can make light of an illness and feel offensive to the sufferer (anecdotal evidence). The smaller format will be a cheap and easy way for doctors to onboard people to the app without bombarding them with information. This will be eye catching and intriguing which will make people more likely to hold onto it and follow through out of curiosity.

PROPOSITION

App As 98% of 18-24 year olds own smartphones and use them frequently, an app allows an easy way to add self-care to their daily routines (Nielsen.com N. Pag). An app will be an effective resource to educate users and help them track their symptoms in an interactive and calming way. It can also utilise technology to easily gain insight from a user’s inputs in a way that analogue resources of the past couldn’t. This could also be used as a way to collect data (with the user’s consent) to get better research on how endometriosis can affect people.

Merchandise Research shows that despite having such prevalence on digital platforms, digital natives are looking for ways to take action in the real world (Kim N. Pag). Merchandise will appeal to digital natives as it is a way to demonstrate their support of a cause in a way that is socially appealing, as they are more likely to buy products that go towards a social cause (Nielsen 37). I will create further promotional aspects such as t-shirts, tote-bags and pins that the proceeds of which go straight towards endometriosis research in NZ. This will act as a way to continue the project offline and facilitate conversation about women’s health, while allowing other sufferers to know you support them.

Target Audience I am targeting my project at younger sufferers of endometriosis ages 16-22. Anecdotal evidence suggests that this is a time where people are breaking away from their parents’ support and finding their place in the world, so self-care is very important. Alongside this, the survey I performed suggested this is a common age to first experience the symptoms of endometriosis, and therefore will help the patient on their journey. Alongside being endometriosis sufferers, my target audience are digital natives. This means that their lives have always been filled with evolving digital technologies (Kim N. Pag). Research suggests that this generation is looking for ways to connect technology with the real world (Kim N. Pag), and therefore creating a digital resource that has a direct effect on their physical life will resonate well with this audience. Rewards are one of the driving features that will keep a digital native coming back to an app. Simply receiving a like on a post rewards the user’s brain with dopamine, and users are more likely to share with those with similar goals (Kim N. Pag). Therefore, utilising the app will heighten the user’s sense of community and reflect positively on their wellbeing. Facilitating a meaningful conversation about menstrual health and promoting self-love in young women will have a lasting effect as these are the people who will become doctors, nurses, mothers, teachers and politicians in the future. Allowing them to become advocates for health will help break down menstrual stigma, as they will act as catalysts for changing the way that women’s health is viewed in society.

PROPOSITION

Onboarding to the app

1. Becky lives in Dunedin with her dad and two older brothers. She loves playing sport and the outdoors.

3. Sees a social media ad about the symptoms of endo. Clicks the ad and is directed to the app store.

2. Gets her first period and has terrible pain. Is confused and scared and has no one to talk to about it.

4. Becky downloads the app. It helps her manage her pain and feel more comfortable talking about it with her dad and her doctor.

Becky, 14 1. Sophie recently moved away from home and into the Victoria Uni halls of residence, where she met her new boyfriend.

3. Sophie talks to a nurse about her symptoms. The nurse tells Sophie about endometriosis and gives her a card with a link to a website on it.

2. Sophie and her boyfriend have sex for the first time and it’s too painful. She feels embarassed and talks to a friend who says her pain isn’t normal.

4. The website helps Sophie feel understood, empowered and no longer embarassed. It directs her to downlod the app, which she shows to her boyfriend, where he can find out what he needs to know about endo.

Tash, 25

Sophie, 18

1. Tash lives in Christchurch with her partner Steph. She feels excluded from all of the period tracking apps are as they are heteronormative and based around fertility. She is frustrated by the lack of LGBT+ representation in the endo community.

3. Tash is part of a few endometriosis support groups on Facebook and she sees that someone shared a motiongraphic about endo that seems a lot different to the usual campaigns.

2. Tash was diagnosed with endometriosis at age 15. She has had 2 surgeries but still has ongoing pain.

4. Tash uses the app to record what she already knows about how her body is affected by endo, and uses the app to remind her to take her medications, and to offer tips and advice to other endometriosis sufferers.

Figures 14-16: Unsplash “Royalty Free images”.

Design Precedents I have looked at a variety of artists and visual styles in order to find one that best communicates my message. Working with other endo sufferers, we decided that a fluid, illustrative style was best for creating a meaningful yet approachable narrative. An illustrative style allows the user to put themselves in the shoes of the character as they have no clear identity, but are still realistic enough to build empathy with. Colours, typography, sound, and tone of voice will help to create a balance where the narrative demonstrates the pain of endometriosis without being so negative that it scares viewers away. The fluid style evokes a sense of calm that would be useful for the user when filling out the app as they are likely doing so while in pain. This style is very different to other medical apps that appear more clinical and structured. I want to break away from this style and make something more personal, which I believe illustration achieves. Micro-interactions and subtle animations will surprise and delight the user and act as a way of relieving pain, as self-care deserves to be beautiful.

PROPOSITION

Figure 17: Balanca, Anne. “Show Reel” 2018. https://annebalanca.fr/portfolio/showreel/ Figure 18: Piotrowska, Katarzyna “Work.” 2017. https://dribbble.com/shots/3855566-Work Figure 19: Yung, Mink. “Cereal” 2017. https://dribbble.com/shots/3217674-Cereal Figure 20: LMNOP Creative “Resistance Postcards.” 2018. http://www.lmnopcreative.com/projects/resistancepostcards/ Figure 21: Tan, Daniel. “The Mindfulness App.” 2018. https://www.behance.net/gallery/60638111/TheMindfulness-App

Design Direction

#f59a7b

#f2d8d0

#e1b129

#d0e2d9

#347e85

Track, educate, connect. #929963

Figure 22: Bennett, Kate. â&#x20AC;&#x153;Initial Wireframe Sketchesâ&#x20AC;? 2018 Figure 23: Colour Scheme Ideas

PROPOSITION

Whatâ&#x20AC;&#x2122;s next? Over the mid-year break I will: Research further into feminist artists and inclusive design. Collect all of the content needed for the app. Look at data visualisation that could be implemented in the app to show insights from user inputs. Develop wireframes for the app and test these with my audience. Look at more motiongraphics and analyse how they are effective. Use this analysis to begin creating a narrative and storyboard for my motiongraphic.

Works Cited

Bush, Deborah. “Endo Information.” Endometriosis New Zealand, Endometriosis New Zealand. Web. Accessed 1 May 2018. Buchanan, Ash. “What Is Wellbeing and Can We Design for It?” Medium. 2016. Web. Accessed 1 May 2018. Cox, Helen et al. “Learning to Take Charge: Women’s Experiences of Living with Endometriosis.” Complementary Therapies in Nursing and Midwifery 9.2 (2003): 62–68. Web. Cox, Helen et al. “Focus Group Study of Endometriosis: Struggle, Loss and the Medical Merry-Go-Round.” International Journal of Nursing Practice 9.1 (2003): 2–9. Web. 14 Mar. 2018. Cooper, Rachel, Christopher Boyko, and Ricardo Codinhoto. “Mental Capital and Wellbeing : Making the Most of Ourselves in Mental Capital and Wellbeing : Making the Most of Ourselves in the 21st Century.” Foresight (2008): 1–22. Web. Ellis, Carolyn, Tony E. Adams, and Arthur P. Bochner. “Autoethnography: An Overview.” Qualitative social research 12.1 (2011): n. pag. Web. Facchin, Federica. et al. “Mental Health in Women with Endometriosis: Searching for Predictors of Psychological Distress.” Human Reproduction 32.9 (2017): 1855–1861. Web. 14 Mar. 2018. Facchin, Federica et al. “Impact of Endometriosis on Quality of Life and Mental Health: Pelvic Pain Makes the Difference.” Journal of Psychosomatic Obstetrics & Gynecology 36.4 (2015): 135–141. Web. French, Katy. “5 Reasons Motion Graphics Help You Connect With People.” Column Five. 24 July 2017. Web. 1 June 2018. Grundström, Hanna et al. “The Double-Edged Experience of Healthcare Encounters among Women with Endometriosis: A Qualitative Study.” Journal of Clinical Nursing 27.1–2 (2018): 205–211. Web. Gunawan, Eliza. “The Need of Rhetorical Design on Global Brands’ Websites.” International Conference on Computing, Engineering, and Design (2017): n. pag. Print. Hudson, Nicky et al. “We Needed to Change the Mission Statement of the Marriage: Biographical Disruptions, Appraisals and Revisions among Couples Living with Endometriosis.” Sociology of Health and Illness 38.5 (2016): 721–735. Web.

Hummelshoj, Lone. “Endometriosis: An Old Problem without a Current Solution.” Acta Obstetricia et Gynecologica Scandinavica 96.6 (2017): 779–782. Web.

IDEO. “The Field Guide To Human-Centered Design”. N.p., 2014. Web. Accessed 20 March 2018. Jones, Cara E. “The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis.” Hypatia 31.3 (2016): 554–571. Web. Jones, Cara E. “Wandering Wombs and ‘Female Troubles’: The Hysterical Origins, Symptoms, and Treatments of Endometriosis.” Women’s Studies 44.8 (2015): 1083–1113. Web.

REFERENCES Kim, Soyun. “User Experience : 5 Tips for Designing Products to Appeal to Millennials.” Mind The Product. N.p., 2018. Web. 22 May 2018. Kouprie, Merlijn, and Froukje Sleeswijk Visser. “A Framework for Empathy in Design: Stepping into and out of the User’s Life.” Journal of Engineering Design 20.5 (2009): 437–448. Web. McDonald, Catherine. “Patients in Control; Why People with Long-Term Conditions Must Be Empowered.” Institute for Public Policy Research September (2014): n. pag. Print. Mackay, Lisa et al. “Soverign Wellbeing Index 2015.” (2015): n. pag. Print. Mental Health Foundation of New Zealand. “Five Ways to Wellbeing: A Best Practice Guide.” N.p., n.d. Web. Meyer, Kate. “Young Adults/ Millennials as Web Users (Ages 18-25).” Nielsen Norman Group (2016): n. pag. Web. Nielsen Company. “Millennials – Breaking The Myths.” 1-41., 2014. Print. Neilsen Company. “Millennials Are Top Smartphone Users.” Neilsen.com, 15 Nov. 2016. Web. 4 June 2018. Ohrnberger, Julius, Eleonora Fichera, and Matt Sutton. “The Relationship between Physical and Mental Health: A Mediation Analysis.” Social Science and Medicine 195.November (2017): 42–49. Web. Pulitzer, Mina. “The Need for Empowered Reproductive Health.” National Women’s Health Network November/December 2017 (2017): 8. Print. Saul, Heather. “The Picture Instagram Didn’t Want You to See.” The Independent, Independent Digital News and Media, 31 Mar. 2015. Web. 20 May 2018. Schippers, Saskia, and Meike Mak. “Creating Outstanding Experiences for Digital Natives.” UX Magazine (2014): n. pag. Web. 20 May 2018. Seear, Kate. “The Third Shift: Health, Work and Expertise among Women with Endometriosis.” Health Sociology Review 18.2 (2009): 194–206. Web. Seear, Kate. “‘Standing up to the Beast’: Contradictory Notions of Control, Un/ Certainty and Risk in the Endometriosis Self-Help Literature.” Critical Public Health 19.1 (2009): 45–58. Web. Te Kete Ipurangi. “Wellbeing, Hauora.” Health and Physical Education Online. N.D. Web. 1 June 2018. Van de Poel, Ibo. “Can We Design for Wellbeing?” The Good Life in a Technological Age (2012): 295–306. Web. 1 June 2018. “Wellbeing.” Def.1. dictionary.cambridge.org. Cambridge Dictionary, N.D. Web. 6 June 2018. Whelan, Emma. “‘No One Agrees except for Those of Us Who Have It’: Endometriosis Patients as an Epistemological Community.” Sociology of Health and Illness 29.7 (2007): 957–982. Web. Wiebe, Jenna. “Duvet Days.” DUVET DAYS. N.D. 1 June 2018.

Illustration List Figure 1: Kuar, Rupi. “Period.” rupikuar.com, N.D. http://rupikuar.com Figure 2: Weibe, Jenna. “Endometriosis Anatomy” Duvet Days, N.D. http://duvetdays.org Figure 3: Bennett, Kate. “The View After Surgery.” 2016 Figure 4: Bennett, Kate. “I am more than my illness” 2018

Figure 19: Yung, Mink. “Cereal” 2017. https://dribbble.com/shots/3217674-Cereal Figure 20: LMNOP Creative “Resistance Postcards.” 2018. http://www.lmnopcreative.com/projects/resistance-postcards/

Figure 5: Bennett, Kate. “Post surgery painting” 2015

Figure 21: Tan, Daniel. “The Mindfulness App.” 2018. https://www. behance.net/gallery/60638111/The-Mindfulness-App

Figure 6: Bennett, Kate. “Tracing over surgery scans” 2018

Figure 22: Bennett, Kate. “Initial Wireframe Sketches” 2018.

Figure 7: Bennett, Kate. “My Endo Journey.” 2018.

Figure 23: Bennett, Kate. “Colour Scheme Ideas” 2018.

Figure 8: Bennett, Kate. “Co-Design: Felicity’s Journey” 2018.

Figure 24: Bennett, Kate. “Some of the different organs effected by endometriosis.” 2018

Figure 9: Bennett, Kate. “Co-Design: Marine’s Journey” 2018. Figure 10: BioWink GmbH. “Clue App Screens” 2013. Figure 11: Endometriosis New Zealand. “All About Me Resources.” Accessed 2018. Figure 12: Speak Endo “Homepage” Accessed 2018. Figure 13: Bennett, Kate. “Project Zeitgiest” 2018. Figure 14 - 16: Unsplash. “Royalty Free Images” 2018. http://unsplash.com Figure 17: Balanca, Anne. “Show Reel” 2018. https://annebalanca.fr/portfolio/showreel/

Figure 18: Piotrowska, Katarzyna “Work.” 2017. https://dribbble.com/shots/3855566-Work

REFERENCES

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McDonald, Catherine. “PATIENTS IN CONTROL; Why People with Long-Term Conditions Must Be Empowered.” Institute for Public Policy Research September (2014): n. pag. Print. Melis, Irene et al. “Sexual Function in Women with Deep Endometriosis: Correlation with Quality of Life, Intensity of Pain, Depression, Anxiety, and Body Image.” International Journal of Sexual Health 27.2 (2015): 175–185. Web. Meyer, Kate. “Young Adults/ Millennials as Web Users (Ages 18-25).” Nielsen Norman Group (2016): n. pag. Web.

REFERENCES Miller, Adam. “Mental Health Awareness Campaign Exposes Challenges in Combatting Stigma.” CMAJ : Canadian Medical Association journal 185.6 (2013): 241–242. Web. Neiger, Brad L. et al. “Use of Social Media in Health Promotion: Purposes, Key Performance Indicators, and Evaluation Metrics.” Health Promotion Practice 13.2 (2012): 159–164. Web. Nor, R M, and R Muhlberger. “Designing to Support Empathy: Understanding User Experience by Using a Model of Interaction in Meeting Human Needs.” User Science and Engineering (i-USEr), 2010 International Conference on (2010): 7–10. Web. Ohrnberger, Julius, Eleonora Fichera, and Matt Sutton. “The Relationship between Physical and Mental Health: A Mediation Analysis.” Social Science and Medicine 195.November (2017): 42–49. Web. Plattner, Hasso. “An Introduction to Design Thinking.” Institute of Design at Stanford (2013): 1–15. Web. Pulitzer, Mina. “The Need for Empowered Reproductive Health.” National Women’s Health Network November/December 2017 (2017): 8. Print. Sanders, Liz. “A Social Vision for Value Co-Creation in Design”. N.p., 2009. Web. Sanders, Liz, and Pieter Jan Stappers. “From Designing to Co-Designing to Collective Dreaming.” Interactions 21.6 (2014): 24–33. Web. Schippers, Saskia, and Meike Mak. “Creating Outstanding Experiences for Digital Natives.” UX Megazine (2014): n. pag. Web. Seear, Kate. “The Third Shift: Health, Work and Expertise among Women with Endometriosis.” Health Sociology Review 18.2 (2009): 194–206. Web. Seear, Kate. “‘Standing up to the Beast’: Contradictory Notions of Control, Un/ Certainty and Risk in the Endometriosis Self-Help Literature.” Critical Public Health 19.1 (2009): 45–58. Web. Shah, Divya K. et al. “Public Perceptions of Endometriosis: Perspectives from Both Genders.” Acta Obstetricia et Gynecologica Scandinavica 89.5 (2010): 646–650. Web. The Nielsen Company. “MILLENNIALS– BREAKING THE MYTHS”. 1-41., 2014. Print. Valentine, Louise et al. “Design Thinking for Social Innovation in Health Care.” The Design Journal 20.6 (2017): 755–774. Web. Van de Poel, Ibo. “Can We Design for Wellbeing?” The Good Life in a Technological Age (2012): 295–306. Web. Whelan, Emma. “‘No One Agrees except for Those of Us Who Have It’: Endometriosis Patients as an Epistemological Community.” Sociology of Health and Illness 29.7 (2007): 957–982. Web. Zarbo, Cristina et al. “Behavioral, Cognitive, and Emotional Coping Strategies of Women with Endometriosis: A Critical Narrative Review.” Archives of Women’s Mental Health 21.1 (2018): 1–13. Web.

Visual Thesis Written and Designed by Kate Bennett (14232508) 222453 Visual Communication Design Research and Development Massey University Bachelor of Design with Honours.

Figure 24: (Background) Bennett, Kate. â&#x20AC;&#x153;Some of the different organs effected by endometriosis.â&#x20AC;? 2018