Uplyft Process Book by Vleeway

it all starts with a few people... thank you to all who have contributed to this project thus far.

introduction

06 – 11

getting to know uplyft

my story

early project phase in the beginning

research

12 – 15 13

16 – 61

getting to the problem

preliminary research

primary lymphedema stories

contents design solution

61 â&#x20AC;&#x201C; 157

sharing stories

preliminary phases of design solution

final phases of design solution

appendix

158 â&#x20AC;&#x201C; 162

research ethics

160

works cited & supplementary sources

162

introduction

getting to know uplyft u ply f t is a n on li n e community for young adults between the ages of 20-35 diagnosed with primary lymphedema (PL), where they can share personal stories, build online and local communities and connections, and discover available support groups. PL is congenital, progressive and chronic characterised by swelling, most commonly of the limbs, leading to distortion in size, shape and function (Harding 4). It is caused by a failure in part of the lymphatic system which predisposes the individual to cellulitis, an inflammation to cellular tissues, and can cause physical, social, emotional, and psychological distress. In addition, without a functioning lymph system, non-reabsorbed fluid, protein, cells, and fat remain in the system and can cause death within 24 hours. Medical care tends to strongly emphasize on improving the physiologic instead of improving one’s social, emotional, and psychological health (Harding 4). PL is considered a rare disease with affected individuals scattered across the globe; these individuals have voiced the need to share their stories with others with the same disease. My undergraduate thesis project, Uplyft—the name

deriving from the benefits of elevating the affected limbs and the spirits of those with PL— has become an opportunity to respond to this problem area. | The two types of PL in this study are identified as congenital which is present at birth and praecox which is discovered after birth and before age 35 (Harding 4). Although, there is a strong need to improve both the emotional and psychological needs of young people diagnosed with PL, the disease remains poorly recognised (Harding 4). In addition, there is very limited literature available on the emotional and psychological effects surrounding the perceptions of body image associated with PL. Therefore, the research and design of this project has become both a challenge and an opportunity to gather and contribute new knowledge about the effects of PL on the younger adults’ self-perceptions of body image and appearance to the general public. | I began this project because of my own experiences with being born with PL in my left arm and intestinal lymphedema. As a younger adult who has grown up with both visible and invisible diseases, I’ve found that even with the support of my

INTRODUC TION

medical care team and close friends and family, my disease has strongly affected me emotionally and psychologically, especially in relation to how I perceive and identify with my body image and appearance. I understand that I may not be the only one who has experienced emotional and psychological stressors due to primary lymphedema. Therefore, I would like to take the opportunity to help my community through the research and design of my undergraduate thesis project. | This process book is a summary of my personal experiences with PL, secondary and primary research, and design solutions from fall 2014 to spring 2015. It illustrates how the application of critical design thinking and interaction and communication design principles will contribute to a new approach that will shift these young individual’s self-perceptions of body image and appearance. | The design methodology applied in the process involves qualitative research gathered through literature reviews such as articles written by experts and people diagnosed with PL, online blogs, forums, and films. I also conducted observations, user testing and a series of interviews with people diagnosed with PL and their family members, and lymphedema specialists from Canada, the USA, and Netherlands. These contacts were referred by and include but are not limited to: the BC Lymphedema Association (bcl a), Canadian Lymphedema Framework (clf), Dr. Vodder School International, Netherlands Network for Lymphoedema and Lipoedema Patients (nlnet), LymphNotes.com, publication authors and editors, vascular anomalies doctors, occupational therapists, physiotherapists, garment fitters, nurse clinicians and registered massage therapists. Feedback has also been provided by the Emily Carr community and primary mentors. These design research methods have not only identified a complex system of needs and challenges, but also allowed me to create an analysis of effective models that demonstrate

success in generating community engagement and improving self-perceptions of body image and appearance through storytelling. |

my story My mother said that when I was 2 years old, she tried to hold back tears when I presented my upper limbs to her and asked if I could have normal hands. In addition to my guilt of making her feel this way, I was also very shocked that I was so conscious of my body image and appearance at such a young age. There are many issues regarding body image and appearance in children which have also strongly affected their caregivers such as their parents. However, the age ranges have differed depending on their unique experiences (Todd, Welsh, and Moriarty 449). | As I recall, I became self-conscious and aware of my visible difference from other people when I was about 4 years old. Of course, it wasn’t just about being aware of the mobility issues resulting from the heaviness and tightness of the swelling, and swollen and stretched skin that other people didn’t have. From what I recall, I realized that I was different from everyone else because my relatives and classmates and strangers would stare at my arm in curiosity and sometimes in fear and disgust. They would ask about the reasoning behind the differences in my left and right limbs, and being a child who has never really thought or wanted to think about her special condition, I didn’t have answers. However, my intestinal lymphedema struck me hard as a child because it restricted me from eating fatty or oily foods. I had to bring my home cooked meals to birthday parties and wasn’t allowed to eat cake, chips, cookies, and so on. New kids I’d meet would ask me about my inability to eat foods and why I had a swollen limb. I’d just reply that I was born this way and didn’t really know why. I think what was both an interesting but frustrating experience

GE T TING TO KNOW UPLYF T

was that they would feel sorry for me. However, I’ve felt that this lymphedema lifestyle was very normal to me, so having people feel sorry for me felt like there was something really wrong with me. There, of course, were also bullies who would make fun of my condition and I was deeply affected by it. These experiences skewed how I saw my lymphedema even more and how I identified myself too. | I became extremely self-conscious and experienced a lot of anxiety growing up because of these experiences. Growing up, I wanted to be normal like everyone else, but I also wanted to be different just like everyone else. I grew up knowing that I was different and thinking that I would never meet social expectations and shallow as it is, have the perfect, golden-ratio body. Along the way, I also lost confidence in myself, felt insecure, and became scared to commit in friendships. I was also too scared to commit to a romantic relationship. | You know what’s so fulfilling about having primary lymphedema though? I’ve become a very good story-teller. As I grew up, kids, teachers, parents, strangers, you name it, would ask me about my lymphedema in my arms and inability to eat fatty and oily foods. They would say that they had never heard of such a condition. Sometimes, I’d make up stories about why my arm was swollen and why I had bandages wrapped all over just to give them relief but to also hide my lymphedema. Even my childhood best friend thought it was a bit weird having a friend with a swollen limb. | In grade 8, I entered high school and of course, curious as 8th graders are, a lot of students asked why I had layers upon layers of bandages on my left arm. I’d try to hide it to discourage others from asking about my arm but who couldn’t have noticed the large bulge of my limb? Depending on who I was talking about my lymphedema to (different kids, parents, teachers, etc.), I’d make up different stories. Occasionally, I’d say that my arm was burned or broken. Sometimes, I’d even say

top Celebrating my third birthday with my family.

key words Younger adults, primary lymphedema, body image and appearance, community, design research, storytelling, connection, accessibility.

INTRODUC TION

that it was stung by a cloud of bees. Of course, some stories had some large gaps so, people would eventually catch me fibbing. I think that growing up, the effect of lymphedema on my social experiences influenced me to be very selective about my group of friends. I only had two groups of people in my mind: friends and acquaintances. I think this was both a good and challenging experience as I became highly analytical in both social experiences and academic work I progressed in high school. However, my lymphedema made me feel anxious in getting to know people as well. As I matured into my senior years in high school, I tried to rewrite my stories by being honest about myself and my condition. This helped me understand myself a bit more. | Growing up with this condition, I also became very aware of my behaviours and became incredibly intrigued with the behaviours of others as well. As I recall, this discovery occurred in my senior years in elementary school. As I watched a multitude of movies, I began to notice how well versed actors were with imitating the behaviours of others and how well they were able to encapsulate different characters. I thought to myself, maybe I’ll base my social identity on the personalities and behaviours of certain characters. Maybe this was the way to appear ‘normal’ but unique to others. As to say, lymphedema also got me into theatre and musical performance. I loved and still embrace acting, singing and dancing. I’ve become very passionate about creative expression.

GE T TING TO KNOW UPLYF T

mentors dr. lucet te w esl e y President of BC Lymphedema Association (bcl a) a n na k en n edy Executive Director at Canadian Lymphedema Framework and Pathways Magazine’s Editor dr. robert h a r r is Director of Dr. Vodder School International dr. dougl a s j. cou rtem a nche Director of Vascular Anomalies Clinic, and Plastic Surgeon at bcch l eona tow er s Director of bcl a c a se y hry n kow Fall Semester Instructor don w illi a ms a n d ta k y uk awa Spring Semester Instructors jonath a n a itk en Director of ecua d’s Health Design Lab dr. gu ill er mi na noël Adjunct Researcher of ecua d’s Health Design Lab

els brou w er a n d joyce bosm a n Bestuurslid n l net (Dutch network of people with lymphoedema and lipoedema) and creators of the book Impressed by You. fatim a i nglis Expert Garment Fitter and Former Physiotherapist at Holy Family Hospital l oa n n e v. Certified Expert Garment Fitter at Macdonald’s Prescriptions #3 by ron shier Consultant Occupational therapist and Lymphedema therapist k im du r l acher Occupational Therapist at bcch be v l a n n i ng Regional Lymphedema Nurse at Central Health, NL. den ise dr isdell e Registered Massage Therapist

early project phase

in the beginning In the earlier phases of my project I had a strong desire to focus on integrating fashion and visible medical aids as the basis my thesis project due to my unsettling experiences with having primary lymphedema and being restricted to the few less expensive options of compression garments. However, as you will soon observe, this mindset became a challenge in my progress. I began researching about different medical conditions and the medical aids that were available to patients in hopes to identify problems which fashion could help unravel. I looked into a variety of different patient experiences and as I researched further into the medical conditions, I realized that social stigmas and apprehension were key themes. In my personal experience of being affected by a chronic and visible condition since birth, and having found that it had strongly influenced my teenage years which had such impact on my identity, I decided to focus on researching about the social stigmas behind chronic visible conditions and attempted to base fashion as a solution to the problems behind the accompanying medical aids. My thesis question at this stage was “how might we

ease the apprehension of teenagers with visible illnesses.” Of course the challenge with basing fashion as a solution to a broad problem was that I was trying to propose a solution without specifying the problem. During this time, I connected with Dr. Sandra Whitehouse, the Medical Lead for Transition from OnTrac: Transitioning Responsibly to Adult Care and Sabrina Gill, a Nurse Clinician and Lead of the Youth Committee at BC Children’s Hospital (bcch) as we shared a similar interest in improving the emotional and psychological well-being of teenagers with visible conditions. I’m grateful to have had the opportunity to have spoken with Sandra as she has provided valuable feedback and support. She was kind enough to introduce me to Sabrina who was open to having me invite the members of the Youth Committee to partake in participatory research such as co-creation and ethnographic studies. However, as I progressed with my project, I shifted and narrowed my focus onto a diabetes as I thought that focusing on a specific medical condition would provide more rich research and higher chances of in-

E ARLY PROJEC T PHA SE

corporating fashion into medical aids. This also led me to change my primary audience from teenagers to adults in their early twenties. Although, involving the Youth Committee in my project became out of my scope, I was invited by Sabrina to be a part of the committee. Since then, I’ve gained a lot of experience in being a part of such an empowered group of individuals and even had the opportunity to participate in a co-creation session conducted by bcch’s design team. | Shortly after I began researching about diabetes, I found that it was not a particular subject I was wholly interested in as I had a strong desire to implement a project on visible conditions. Eventually, in my process of jumping around different topics to figure out ways to incorporate fashion as the basis of my project, I realized that my strongest desire was to help those whom I knew was in dire need of help. Therefore, I decided to focus onto the emotional and psychological aspects of lymphedema. Through my experiences of being a patient, I realized there was a lack of emphasis on the emotional and psychological side of lymphedema. I also found this in other peoples experiences, “I kept up my appointments at St. Oswald’s and the nurses were still great but there never seemed to be any time to talk about how this was affecting me emotionally” (Summerhill S29). I realized that I was avoiding it because I was afraid of confronting my own medical condition and the possible consequences I may encounter during the process. I also felt hesitant because lymphedema is considered a rare condition, and thus, more of a challenge to find secondary and primary resources. However, I’m glad that I continued with this project as I’ve learned much about both physiological, emotional, and psychological aspects of lymphedema. I’ve had the opportunity to meet such wonderful individuals from the lymphedema community who are very optimistic, strong, and inspiring. I’m thankful to have such a supportive community. In light of

this project, I must say that lymphedema is only a part of who I am and not all of me.

right A poster I designed to display my preliminary research stage. I began ideating from a broad perspective and looked at a spectrum of visible conditions.

research

getting to the problem In the beginning of my research phase, I began researching about the physiological and biomedical aspects of lymphedema to understand more about the bodily conditions such as who it affects, the basics of the lymphatic system, the differences between primary and secondary lymphedema, and current methods for self-management and care. I also developed my preliminary thesis question to help me focus on my research goal: “how might communication design improve the emotional and psychological well-being of those diagnosed with primary lymphedema?” My thesis question changed each time I discovered a new finding. As I learned more about the lymphatic system, such as its connections to the immune and circulatory system (Bergan and Bunke 3) and how primary lymphedema is congenital (Bergan and Bunke 4) while secondary lymphedema is caused by traumas and environmental triggers such as surgery and cancer therapy (Bergan and Bunke 5), I realized how very few research articles have focused on the emotional and psychological well-being of people affected by lymphedema. This has served both as a new challenge

and opportunity for me to gather and contribute findings about the emotional and psychological aspects of primary lymphedema to the healthcare community. In addition, lymphedema could gain more awareness and individuals who are affected by lymphedema can use this information as a source of inspiration. | As I probed deeper into the research, I began focusing on the general emotional and psychological experiences of individuals with stages 1-2 primary lymphedema so that I could understand the differing aspects that contribute to these experiences. Stage 1 is characterized by non-fibrotic edema which puts pressure on the affected limb and can be reduced by leg elevation, whereas stage 2 is characterized by some degree of present fibrosis, which as a result, the edema does not put on pressure or reduce with leg elevation (Bergan and Bunke 6). I positioned my project specifically for those who were in their early twenties as I aimed to explore my own medical condition. During this process as well, I was beginning to feel my legs being heavier than a few months before and so I asked a few lymphedema specialists about my condition. It

RE SE ARCH

was discovered that I have mild lymphedema in my legs. Although, I panicked and had an emotional toll in this process, it made me realize how it must have felt for individuals who had been living normal lives before their lymphedema triggered. Because, in my case, I’ve been living and aware of my lymphedema in both arms and intestines, so living with lymphedema had become normal for me. I eventually broadened my the age group to ages 20-35. | In the first week of implementing my new project, I contacted various lymphedema organizations and professionals from Canada, the usa , and Netherlands to learn about their insights and experiences with lymphedema and also connect with their lymphedema contacts. During this stage, I prepared and waited for my research ethics forms to be approved so that I could gather interview participants from my contacts. These contacts include but not limited to the BC Lymphedema Association (bcl a), Canadian Lymphedema Framework (cl f), Dr. Vodder School International, Netherlands Network for Lymphoedema and Lipoedema Patients (n l n et), Lymph Notes, publication authors and editors, vascular anomalies doctors, occupational therapists, physiotherapists, garment fitters and registered massage therapists. I also partnered with bcl a and generated a timeline (see on page 15). | However, due to bcl a’s limited funding, we decided that bcl a would work better as a mentor. I think that this process of connecting with other members of the lymphedema community inspired and motivated me to make this project an even bigger success. Being able to see and feel the optimism and enthusiasm by lymphedema caregivers made me feel hopeful and strongly supported. I was provided with more secondary resources and feedback on my process from them and even introduced to a few individuals who were also diagnosed with primary lymphedema and have been more than eager to discuss about our personal stories.

preliminary research Before researching about the emotional and psychological effects of lymphedema, I looked at articles that focused on these effects from the perspective of general visible diseases to analyze common themes which lymphedema may share with these conditions. I read “Stigma of Visible and Invisible Chronic Conditions” by Gloria Joachim and Sonia Acorn to better understand the common issues that people with visible diseases encounter and the types of strategies they use to cope. I also read “The Social Construction of Illness: Key Insights and Policy Implications” by Peter Conrad and Kristin K. Barker to understand how my user’s perceptions of their body image and appearance may have derived from the meaning and experience of the term ‘illness,’ as its definition has been formed by cultural and social systems (Conrad and Barker 67). As I’ve had a visible disease for all my life, it surprised me how I strongly I could relate to all of the points discussed. These points have applied to the other lymphedema research articles I’ve reviewed and interviews I’ve conducted with my audiences.

soci a l stigm as During my analysis, I discovered that people who cope with stigma use a variety of strategies including decisions about whether or not to disclose the disease and undergo further stigma, or attempt to hide the disease and pass for normal” (Joachim and Acorn 243). Stigmatizing is defined as a process where social meaning is developed along with social behaviours. Goffman describes three types of stigma including physical deformities, character blemishes involving characteristics such as cowardliness, dishonesty, addiction, and mental illness, and tribal stigma, due to race or religion (Joachim and Acorn 244). | The six dimensions of stigma include

PRELIMINARY RE SE ARCH

topâ&#x20AC;&#x201A; Empathy map exercise where my classmates and I analyzed interview videos and gathered our observations into the form of colourful sticky notes.

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LIFT

First Semester timeline September 4th - Dec. 11th 2014

oct 23 - nov 3: interviews with Adults with Primary Lymphedema

oct 22: final 3 sets of interview questions approved Project Partner

oct 20: final 3 sets of interview questions submitted to Project Partner

oct 17: confirmed group of Interview Participants

oct 16: first draft of 3 sets of interview questions approved by course instructor

Assumption questions & potential contacts for project (support groups, partnerships, participants)

SEPTEMB ER

oct 10: REB form submitted for approval

OC TOB ER

secondary research occurs througho

PRELIMINARY RE SE ARCH

nov 4 - 11: interviews with Immediate Friends/family

nov 12 - 19: interviews with Medical Care Team

nov 24: secondary research & interview findings submitted to Project Partner for review dec 1: feedback of findings provided by Project Partner to Student dec 11: end of term presentation

dec 15: feedback from term presentation provided by Student to Project Partner

NOVEMB ER

DECEMB ER

out timeline ( articles and media ) topâ&#x20AC;&#x201A; First timeline of the fall semester. However, schedules changed as the project partner became a mentor and gathering and interviewv ictor i a l ee ing participants occurred in different parts of the timeline.

com m u n ication design 2014

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the 3 types of social stigma physical deformities | character blemishes | tribal

concealability, course of the condition, strain on relationships, aesthetic qualities, cause of the condition, and peril, and these “affect the interpersonal roles of those stigmatized.” Concealability is the level to which the disease is hidden or visible and is described as a vital dimension of stigma. This is due to visibility’s key role in generating negative social reactions (Joachim and Acorn 244). The course of the condition is the degree to which the disease shifts over time. Strain is placed on interpersonal relationships as the more visible and aesthetically unappealing the disease, the more relationships are strained. For instance, talking with a person who has a visible skin disease could strain a relationship by distracting from social dialogue (Joachim and Acorn 244). Aesthetics qualities is the degree to which a disease affects the appearance of a person. The cause of the stigma is questioning whether the condition congenital or acquired. Peril is based on the dangers associated with stigmatized individuals (Joachim and Acorn 244). | Those who are identified as ‘normals’ do not possess a stigmatized attribute and believe that the stigmatized individuals

are not fully human as their differences cause ‘normals’ to question their perspective of the world. ‘Normals’ participate in discriminatory actions to enforce their beliefs and build a belief system that allows them to rationalize the stigmatized as dangerous (Joachim and Acorn 244). Words such as ‘moron’, ‘loony’ or ‘cripple’ are used to strengthen their “beliefs that the stigmatized are inferior.” Beliefs about stigma are also often associated with public perceptions predominant at particular times. However, some without this stigma appear to believe that people with visible diseases are more righteous than those who are not (Joachim and Acorn 244). | An individual’s physical appearance is highly valued in most Western societies as appearances affect how individuals feel about themselves and how others identify and value them (Joachim and Acorn 245). However, most people are less than the idealized person. Therefore, it is questioned whether an underclass of people who are less than the idealized beauty is being generated (Joachim and Acorn 245). | There are two ways that Goffman distinguishes how stigma can be experienced. An

PRELIMINARY RE SE ARCH

concealability

the 6 dimensions of social stigmas

course of condition strain on relationships aesthetic qualities cause of condition peril

individual may be discredited or discreditable. A discredited individual is one who shows visible signs of being different (Joachim and Acorn 245). When signs are visible, those individuals are stigmatized and discredited by others. ‘Damaged goods’ has been used as a term to describe ways in which popular American culture depicts people with medical illnesses (Joachim and Acorn 245). While most ‘normals’ “do not openly attend to the aspect of the stigmatized individual that is discredited,” the stigmatized individual behave as if the differences are unimportant. In order to prevent their conditions from being disruptive, they go to great lengths such as hiding their diseasein public spaces (Joachim and Acorn 245). | Stress in social relationships often occur with those who have a visible disease such as those diagnosed with PL as they try to manage feelings about being discredited (Harding S10; Joachim and Acorn 245). They manage these stressors by disregarding painful occurrences, isolating themselves into small groups to “normalize their characteristics, finding secondary benefits, challenging the status quo, and covering.” Covering is defined as

an attempt to reduce the effect of the visible disease. For example, when a lymphedema affected limb is viewable in the public, covering minimizes the effects and stress (Harding S8; Joachim and Acorn 245). Joking about a visible disease is also an example of covering (Joachim and Acorn 245) and is a method used by individuals diagnosed with PL as well (Williams, Moffatt, and Franks 283). Similarly to my own experience, joking has been as an attempt to help the general public feel comfortable. | The management of information is vital in the lives of people with chronic visible disease as they may be uncertain about whether or not to disclose their disease, how much information to provide and to whom. Although disclosure may expose information that may discredit, hiding a disease with the threat of being discovered also has risks (Joachim and Acorn 245). Risks include being rejected and stigmatized, having difficulty handling the responses of others, and losing control (Joachim and Acorn 245). In addition to the management of information, difficulty disclosing has also been apparent. It is related to beliefs that the responses of others

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will be negative (Joachim and Acorn 245). Negative parental response has also been a source of resistance to disclosure. Beliefs that a medical condition is something private and the guilt and shame about being the focus of care and centre of attention influence people to not disclose. Parents who advise their children to hide a disability are likely to “raise children who go to great lengths not to” (Joachim and Acorn 246). However, parents who accept a child with a visible disease, “help the child to be less concerned about his or her discreditable attribute” (Joachim and Acorn 245).

soci a l construction of ‘illness’ As I progressed onto discovering how people diagnosed with PL may socially identify themselves, I came to discover its connections to the social construction of the term ‘illness’. Through this reading, I discovered that the meaning and experience of medical conditions are formed by cultural and social systems at an experiential degree. This is based on how individuals develop understanding of their disease, develop their identity, and live, in spite of their illness (Conrad and Barker 67, 76). I also discovered how illness and disease are social constructions as they are evaluative classifications based on the ideas of the socially “acceptable” or “desirable.” In relation to lymphedema, because the chronic swelling of an affected limb is not ideal in the general population, it is not socially acceptable and desirable. Therefore, many people diagnosed with lymphedema often feel socially isolated (Harding S6). In addition, medical discourse can also influence people’s behaviors and form their identities (Conrad and Barker 69). | Cultural meanings have an impact on the way the condition is experienced, portrayed, socially responded, and type of policies being created involving the disease. Social construc-

tion focuses on how the definition of illness is formed by social interactions, shared cultural traditions, and is constantly changing (Conrad and Barker 69). Similarly to lymphedema, in the case of contested illnesses, the fact that the certain conditions are rare, often makes it difficult for them to have their symptoms acknowledged or treated as they are often faced with skepticism by their doctors (Williams, Moffatt, and Franks 281-282; Conrad and Barker 69). Charmaz discusses about how the life of some individuals are minimized when they are immersed in the day-to-day aspects of managing a chronic disease. They become increasingly cut off from the routines of conventional life, unable to work, spend time with family, socialize with friends, or move about freely. People struggle to make sense of their illness and reclaim a sense of self. | Individuals may also engage in identity reconstruction to reclaim a sense of self. An individual’s chronic condition can influence a re-evaluation of their past life and identity, and at certain times, the formation of a new illness identity (Conrad and Barker 72). Some people diagnosed with PL who create and join illness-based social movements, generate knowledge about their own medical conditions, and develop new communities based on their ‘illness identities’ (Conrad and Barker 72; Summerhill S29).

PRELIMINARY RE SE ARCH

“People endeavor to endow their illness with meaning within the context of their personal and social relationships, employment status, health insurance coverage, religious and cultural beliefs, and the like.” —Conrad & Barker 72

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primary lymphedema stories Alongside the perspectives behind the general spectrum of visible conditions, I’ve also explored and tapped into the emotional and psychological aspects of lymphedema through the research of literature reviews, online blogs, forums, and films. These resources include personal stories of people affected by primary and secondary lymphedema and secondary perspectives from researchers. However, I and other researchers have found very few research articles – compared to the few that focus on the physiological and biomedical – that specifically concentrated on the emotional and psychological aspects of primary lymphedema (Upton and Solowiej 51). Primarily, secondary lymphedema has been highlighted in research articles due to its most common connections to cancer treatments such as breast cancer surgery (Williams, Moffatt, and Franks 280). However, studies about the experiences of patients with lower limb primary lymphedema have recently emerged as well (Upton and Solowiej 51). | Because of the few available articles about the experiences of younger people with primary lymphedema, I have looked into the emotional and psychological experiences of people between 21-60 who have been diagnosed with congenital and praecox lymphedema. I have also reviewed literature about children and teenagers to gain an understanding of what they may have experienced growing up with this condition, how their condition has influenced their growth as adults, and their relationships with people they trust and interact with the most as decisions on disclosure have been based on trust in social interactions for all age groups (Joachim and Acorn 245). I have also conducted interviews to understand the first-hand experiences and perspectives of those in the lymphedema community: people diagnosed with primary lymphedema, their friends and family, and lymphedema professionals. | Through my research, I have discovered four main themes that have contributed

to my audience’s overall emotional and psychological well-being. These include lack of knowledge, financial difficulties, open dialogues, and body image and appearance. However, body image and appearance and open dialogues have appeared to be the most common and linked themes and thus, have become the problem areas I will be exploring in this project. In addition, although affected by the same disease, the experiences of each individual differs because of intrinsic and extrinsic influences. The present system is inequitable and the physiological, emotional, and psychological impact of the condition and the ways in which young people find help from the system for help has not been given much consideration (Harding S4). Below are three sets of interview questions I have generated for people diagnosed with primary lymphedema and their friends and family, and healthcare professionals. The interview questions have been primarily designed to gather answers relating to the interviewee’s perspective of body image and appearance issues and experiences prominent with those diagnosed with primary lymphedema and the types of relationships they share in the community.

primary research group People diagnosed with PL

1 How has lymphedema affected your life? + When were you diagnosed?

2 What are the most difficult things about having lymphedema?

3 What bothers you most about the visibility of your swelling? + How have you learned to cope with looking different?

PRIM ARY LYMPHEDEM A S TORIE S

4 When do you tend to hide your swelling and from whom?

5 What has helped you manage stress about your swelling?

6 What do you believe can help you manage stress about your swelling?

7 When do you feel the most comfortable

4 When were you aware of your family/ friend’s lymphedema?

5 How often does your family/friend talk about their emotional or social issues regarding their lymphedema to you?

6 Why do you think your family/friend gets stressed about their lymphedema?

talking about your lymphedema and to whom?

7 What do you think has helped your family/

8 Which member of your medical care team

8 What do you believe can help your family/

do you feel the most comfortable reaching out for support? + How do they support you?

9 How important is it to connect with other people in similar situations? + What would you feel is the best way to do so and when?

10 What advice would you like to share with another person diagnosed with primary lymphedema?

11 Is there anything else you want to talk about that we haven’t discussed?

secondary research group Friends and family of those with PL

1 Could you tell me about yourself? 2 As a family/friend, what type of relationship do you have with your family/friend?

3 What activities do you and your family/ friend like to engage in? + How often do you and your family/ friend engage in these activities?

friend manage stress?

9 What advice would you give to a person whose family/friend is affected with lymphedema?

10 Is there anything else you want to talk about that we haven’t discussed?

tertiary research group Lymphedema Specialists

1 Do your patients talk to your about their body image in relation to their lymphedema?

2 Why do you think your patients get stressed about their lymphedema?

3 What do you think has helped your patients manage stress?

4 Have you tried other methods to help your patients manage stress?

5 What advice would you give to your own child if they were diagnosed with primary lymphedema?

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6 What advice would you give to a person whose family/friend is affected with lymphedema?

7 Is there anything else you want to talk about that we haven’t discussed?

top Mind map of the factors contributing to the emotional and mental well-being of primary research audience. Discovered that body image and appearance was the most common contributor.

PRIM ARY LYMPHEDEM A S TORIE S

top â&#x20AC;&#x201A; Mind map of the second week of secondary research. Discovered social stigmas, and environmental and internal factors contributing to the emotional and mental health of primary research audience.

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top â&#x20AC;&#x201A; Flushed out mind map of the social stigmas relating to PL.

PRIM ARY LYMPHEDEM A S TORIE S

k now ledge Young people diagnosed with primary lymphedema have struggled to find an accurate diagnosis and appropriate lymphedema treatment, which have appeared to have resulted from a general lack of professional awareness of lymphedema (Harding S4). Individuals had suffered swelling for many years before being given the proper diagnosis and their experiences were filled uncertainty and anxiety. In several cases, individuals were given wrong diagnosis and had been treated inappropriately, “…there was no explanation for the fact I was getting high temperatures and…the fact the swelling wasn’t going down…it lasted for quite a while…they couldn’t figure out the reasons for it…” (Williams, Moffatt, and Franks 281). Harding has also stated that the estimated annual incidence rate in young people of 1.15:100,000 population. Other figures suggest that young patients with PL comprised 11% of all annual non-cancer-related lymphedema referrals to a service” (S4). This also probes the question of whether lymphedema is actually a rare disease as there are constant misdiagnoses and a lack of awareness in the general public and healthcare community (Keen 54; Harding S4).

“You have got a pretty face, deal with it, nothing anyone can do, it’s just one of those things.” —Harding S8 From all sources I have reviewed, it has been found that the experience of individuals during the diagnosis process has been complicated as

most felt that the health professionals they encountered, lacked understanding of the effects of lymphedema. The sources have also talked about how these professionals held poor attitudes and communication skills (Summerhill S28; Harding S8). Ineffective treatments are constantly implemented due to the lack of knowledge in healthcare professionals (Bosman and Brouwer 8; Harding S8). Anxieties have focused on the lack of interest, knowledge and support among medical professionals and research has reported this as a common perception among people with lymphedema. There has also been a lack of empathy of some medical professionals reflected in the presented attitudes during consultations (Harding S8). When Natascha Assies was in high school and diagnosed, she was told by her doctor, “You’ll just have to learn to live with it” in result of the many ineffective diagnoses (Bosman and Brouwer 8). A participant in Harding’s investigation also remained distressed when remembering being told by the doctor: “You have got a pretty face, deal with it, nothing anyone can do, it’s just one of those things” (Harding S8). | Primary Participant 1 who had received treatment from registered massage therapists, found that they trust their registered massage therapists the most in their medical care team as they found them most knowledgeable, motivated, and interested about treating their lymphedema. However, when not consistently seeing a lymphedema specialist, they feel disconnected from the medical community (Primary Participant 1). Although, I must say, in my own unique experiences of having this condition and growing up in a very friendly and welcoming community at BC Children’s Hospital, I’ve come to enjoy most of the company in my healthcare team. This has also become a key point in my research as it provides insight into the circle of trust of my users. | There is a lack of knowledge by the general public who are unaware of

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ways to effectively communicate with my users without offending them. For example, teachers who aren’t knowledgeable about the aspects of the condition often set these individuals aside rather than allowing them to passively take part in the physical activities, thus, contributing to their distress. Parents of children have also felt distressed at the reaction of teachers to the different trousers and shoes needed to accommodate the affected lower limb (Harding S10). For example, a child was questioned by their teacher about wearing trainers despite having an explanatory letter (Harding S10). | Individuals have wished to have been diagnosed and treated by someone who were knowledgeable about the condition, “believing they would have been empowered to manage their condition” (Harding S10; Participant 2). A referral to a lymphedema specialist has been noted as a key milestone in the lives of these individuals. However, many individuals needed to wait longer than a year to be referred. Once they were referred, they felt supported and motivated in their treatment as they were able to receive comprehensive information (Harding S10).

fina nci a l difficulties My interview participants as well as secondary literature have all voiced concerns about medical treatments being costly which has thus, contributed to the users’ anxiety regarding their finances. Medical treatment such as compression garments are medically necessary (Ehrlich and McMahon 172). Compression garments have been said to be a toll on the users’ finances as the garments are costly and must be replaced every six months to eight months (Ehrlich and McMahon 172). The opportunity to have the condition recognized and treated after years without help has been exceptionally important, although anxiety about the future is evident, “I do get worried that the support’s going to dis-

appear, knowing that things get set up on a short term basis…what to me might be a huge improvement on a piece of paper might not look very interesting or worthwhile but to me psychologically it might make a huge difference” (Williams, Moffatt, and Franks 284). | Although, compression garments in the United Kingdom have been supplied to and paid for individuals with primary lymphedema by the National Health Service (n hs), 30% of these individuals have had to find other sources of funding or paid for their own garments (Lam et al. 18). However, all of the lymphedema specialists I interviewed in Canada have said that because lymphedema is an uncommon condition, many insurance companies do not provide or provide minimal coverage for lymphedema treatments such as services and garments. As well, Carol L. Johnson has spoken about how Medicare considers compression garments and bandages to be experimental. Therefore, insurance companies in the USA refuse to provide coverage for lymphedema treatments. This is likely due to the limited lymphedema research being done in the United States, even though lymphedema treatment is considered standard of care in Europe (Ehrlich and McMahon 172). Unlike PL, women with breast cancer have certain protections under law including requiring treatment of lymphedema associated with breast cancer treatment (Ehrlich and McMahon 172). This not only shows the financial burden of primary lymphedema but it also creates a sense of isolation for those affected by the condition. All interview participants have also spoken about difficulties accessing funding and thus, individuals face financial difficulties, as many have just graduated from post-secondary school with student debt and/or are entering the workforce.

PRIM ARY LYMPHEDEM A S TORIE S

top â&#x20AC;&#x201A; Mind map of the factors contributing to the emotional and psychological well-being of children diagnosed with primary lymphedema, as well as parentâ&#x20AC;&#x2122;s effects of condition

body im age & a ppe a r a nce PL has been described as a unique and complex experience influencing numerous facets of life including body image and appearance, especially younger women (Williams, Moffatt, and Franks 283; Lam et al. 21). Body image involves body reality, body ideal and body presentation. There has been a desperate need to keep the affected limb(s) hidden as it has affected all aspects of their lives including fashion, education, social relationships and physical activities, and has resulted into challenges with self-esteem and self-image. A change in a ‘normal’ image, such as a swollen limb, has a variety of factors including biological, social and psychological. Physical shifts of appearance have concurred with results of studies into the health related quality of life (hrqol) in patients diagnosed with lymphedema, which revealed limb size changing body image (Harding S6). An investigation about the emotional well-being in youths with or without a chronic condition discovered that although adolescents with a medical condition had a lower rating than those with-

out, the emotional development of the condition has been strongly associated with positive body image and family relationships and support (Harding S6; Bosman and Brouwer 20). | Swelling has become a constant reminder for the individuals that there is something wrong with them (Harding S8). Some individuals have perceived themselves as abnormal or “freaks” and believe that others would reject them. Therefore, they have continued to hide their ‘discreditable limb’. Clothes were not the only covering method employed as an individual had said “I’ve tried everything from shark bites to broken legs” (Harding S10). Poor body and self-image and perceived poor prognostic prospects led some to speak of amputation as an option. Terms such as ‘disgusting’, ‘ugly’ and ‘Michelin man’ were used by Harding’s participants when describing their limb. The swelling has resulted into an immediate shift in body reality (Harding S8). As these individuals begin to compare themselves to their peers, illusions are shattered by the development of the swelling, denying them the chance to wear desired clothes. Not only do they have adjust to adoles-

PRIM ARY LYMPHEDEM A S TORIE S

left Mind map created and provided by Guille Noël that connects findings from the research, based on the user’s daily life such as primary environments, community, and activities. Opportunities, existing tools, barriers and user’s needs are generated in the process.

the swelling of her lower limb and connect her back to her memories of when her lymphedema had not been triggered (Primary Participant 1). Initially, she felt self-conscious revealing her leg, however, she felt that she had to overcome her fear as swimming has been one of the few ways to relieve her stress (Primary Participant 1). During my analysis, it was important to remember that each individual has intrinsic and extrinsic factors from their life that affect their overall emotional and psychological well-being. Therefore, one must consider the unique experiences of each individual that contributes to their perspectives and feelings about their lymphedema. | Fashion, translated through the body ideal, highly contributes to the way in which body presentation shifts (Harding S6). My users have needed to alter their clothing style to accommodate their swollen limb and purchasing clothes has been a challenge (Harding S10). Social life has affected many individuals, especially for women and those with swellings in lower limbs or torso (Williams, Moffatt, and Franks 283; Lam et al. 20), “…being a young female, body image seemed to outweigh how

cent physical changes but also cope with an abnormally sized limb. Swelling has been viewed as a constant reminder that there is something wrong with them. Many individuals have been determined to keep their swollen limbs hidden and at times, have socially isolated themselves (Harding S8). | Although, swimming and water aerobics relief swelling and emotional stress from the affected limbs, Harding’s studies had found these activities being discontinued by participants because of embarrassment. There are difficulties facing other people due to social stigmas and isolation, “I’ve always worried about people’s reactions…I mean I’ve noticed a couple of times when I go to the swimming pool, as soon as they see the leg, it’s like their reason is maybe it’s infectious…whether it’s intentional or not, some people do get out the pool” (Williams, Moffatt, and Franks 283). However, one of my participants who, in her previous years before her lymphedema in her leg was triggered had vigorously participated in physical activities as her hobbies. These included, running and swimming. Swimming has been one of the few physical activities that has helped her relief

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worse off others were…this was my life and my problem seemed the biggest thing to me” (Summerhill S29). Some reasons included their lack of confidence and feelings of self-consciousness and restrictions on clothing and footwear. Social activities such as dancing are impossible for some. Close relationships have been affected, as swellings of the limbs have contributed to the damage of self-confidence and inhibition to intimacy (Lam et al. 20). | Personal issues and embarrassment were apparent as individuals voiced their feelings, “I was at the bank and someone said oh I don’t think your zip is done up and, well it was but my trousers were sort of bulging, I just said, well I’ve got funny underclothes, but I was so embarrassed” (Williams, Moffatt, and Franks 283). In addition, social isolation has become apparent, “I felt so embarrassed when a shop employee told me: Can I ask you what happened to your leg? I did not go shopping anymore!” (Symvoulakis, Anyfantakis, and Lionis 355). Shopping has been

“I hated people drawing attention to it…it felt like everyone focused on the leg not me.” —Williams, Moffatt & Franks 283 described as a ‘nightmare’ on more than one occasion. Another individual recalled shopping for shoes with her mother saying that “It used to end in tears” (Harding S10). | Stress levels based on the visibility of the compression garment and swelling have differed for individuals. Some individuals have had strong impacts from wearing compression stockings, “It was the most horrible thing I have ever been given” (Harding S8). More than half of Lam et al.’s par-

ticipants had felt that compression garments affected their daily life by limiting their choice of clothing or footwear and restricting their activities because it was unsightly or took much effort and time to put on (20). For one of my participants, it has been both the aesthetics of the compression garment and visibility of the swelling (Primary Participant 2). For the other, it has predominantly been the visibility of the swelling as the size of the limb is viewed as abnormal in the general population (Primary Participant 1). In situations, individuals have also been traumatized by being bandaged and showing the bandaged limb in public, “you can’t hide it when it’s bandaged like this, it’s in your face quite literally” and “the first time I was bandaged, I left and sobbed my heart out.” The bandages were also felt to be disruptive as they affected their daily lives (Williams, Moffatt, and Franks 284). As a result of the user’ physiologic differences, they feel different and isolated from the general public (Summerhill S29). Although, the term ‘different’ has been voiced with a negative connotation by these individuals (Williams, Moffatt, and Franks 283), I think that positive narratives can be used to shift the negative connotations of ‘different.’

opening di a logue w ith positi v e na r r ati v es As primary lymphedema is a rare condition with affected individuals scattered across the globe desiring to speak about their stories and listen to those who are also diagnosed with the condition, effective and accessible support networks are in need (Tertiary OT Participant 3). The issues around communicating with others, talking to others about their condition and being open with friends and family have been apparent. Narratives described the individuals’ frustrations with other’s lack of knowledge about lymphedema and the way they dealt with

PRIM ARY LYMPHEDEM A S TORIE S

“…being a young female, body image seemed to outweigh how worse off others were…this was my life and my problem seemed the biggest thing to me.” —Lindsey Summerhill comments from others, by rehearsing what they might say, “they don’t really understand the condition…so it’s quite difficult to explain it to people…it’s very difficult for people to comprehend what’s wrong with you…I suppose you’re not really ill but you’re not right either” (Williams, Moffatt, and Franks 284). In addition, during teenage years, some individuals developed relationships with others. However, some struggled as disclosing the disease which caused anxiety and was often avoided (Harding S10). However, my interview participants spoke about the benefits of dialogue between individuals diagnosed with lymphedema on acceptance and understanding of their condition. Some individuals were tearful in the interviews conducted my Williams, Moffatt, and Franks; the devastating effects of lymphedema became apparent, specifically with younger women diagnosed with PL, many of whom appeared to have problems with depression and anxiety. Some expressed that this was the first time anyone had sat and listened to their story, “I lose my patience so quickly…I get into depression…some days I do cry about it…it may just be out of the blue for no reasons…sometimes like in the mornings…I can’t even get out of bed” (Williams, Moffatt, and Franks 283). A support network can become a preliminary step in developing acceptance of one’s lymphedema as individuals are

able to meet and speak with others with the same disease who are also at varying stages of acceptance and understanding of their lymphedema (Primary Participant 1). | Harding’s study with young individuals have shown that there are specific psychosocial and emotional needs at different stages in their journey. They are unique and should be encouraged in developing appropriate support networks (Harding S10). Among the Brief-cope subscales (see on page 39 & 40), active coping, planning, and acceptance showed the highest mean score of 6.0. However, my conversations with lymphedema specialists and my users, a form of a support network where people diagnosed with PL can speak and listen to each other’s stories has and can become the most common healthy relief of stress. | Through sharing stories, individuals with lymphedema are also able to personally gain insight (Primary Participant 1). Being able to speak about and listen to one’s life stories and experiences with lymphedema to another diagnosed individual, has helped reconstruct their identities and feel less alone (Primary Participant 1; Primary Participant 2), “In either case these interactions help me piece together my own identity as a woman living with lymphedema and on a basic level simply make me feel less alone in the daily fight” (Primary Participant 1). This has also enabled individuals to reflect on their reactions when meeting those who are still in the dejected stages of diagnosis and those who are optimistic and motivated (Primary Participant 1; Primary Participant 2). | The ability to speak and listen to another can reduce feelings of isolation as the commonalities through their stories create a sense of community. Factors that have been associated with increased psychological distress and sexual dysfunction in patients with lymphedema were low levels of social support. It was surmised that social support may help combat fears of abandonment and feelings of isolation (Symvoulakis, Anyfantakis, and Li-

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PRIM ARY LYMPHEDEM A S TORIE S

page 33 & 34 and top left & rightâ&#x20AC;&#x201A; Brainstorming exercise taught and introduced to our classmates to help us prepare for our light as flight exercise. This exercise helped us to understand our findings and possible resources we need in the future.

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“I had to cope with high school, and college, and going on job interviews, all on my own. It has felt very lonely.” —Ehrlich & McMahon 150 onis 355). Individuals such as Lindsey Summerhill has spoken about her experiences and her peers in desiring social support, “About 2 years ago I was reading Lymphline magazine and there was a letter from a 26-year old girl who also had PL and wanted to speak to someone her own age. This took me back to how alone I used to feel and wished there was someone my age I could talk too” (S29). | Having been able to connect with others in the same age group who also have PL, individuals have also felt more motivated and empowered to support and spread awareness of lymphedema, “With the former I find that I rally to be a support and with the latter I am re-energized in my desire to spread awareness and overcome my own insecurities stemming from lymphedema” (Primary Participant 1). As Summerhill was inspired by other peoples desires to connect and in result, created a social networking group on Facebook, “This inspired me to set up a group on the social networking site Facebook to try and bring together all young people who suffer from the condition to talk about their experiences, concerns or just to meet people in a similar situation as them. Any age are welcome to join if they want to” (S29).

story of “i” in illness Having found articles directing to issues about the perceptions of those diagnosed with pri-

mary lymphedema regarding their body image and appearance, I read “The Story of “I”: Illness and Narrative Identity” by Rimmon-Kenan Shlomith to understand how individuals with conditions such as lymphedema, create their narrative identities by basing their life story and identity on their condition (Rimmon-Kenan 10). Having read this article, I thought about how storytelling could help shift the perceptions of those diagnosed with primary lymphedema. As someone who has PL, I have also experienced building my narrative identity based on my condition. I’d like to flip narrative stories as a direction where the user is focused to be more than just the “I” in illness. Because we might have lymphedema but lymphedema doesn’t have us. | Narrative identities are first-person nonfictional narratives focused on how an individual has created their identity based on their disease. These are affected by socially and culturally constructed expectations (Rimmon-Kenan14). Shlomith Rimmon-Kenan discusses about how narrative is a subjective construction of “identity” (Rimmon-Kenan 12). Narratives are one way of coping with the effect of long term disease. Although there is a focus on the subjective construction of identity, the constitutive role of cultural narratives must be acknowledged (Rimmon-Kenan 11). In Western society, if there is a failure by the affected individual to respond positively to their disease, the able-bodied becomes disturbed (Rimmon-Kenan 11). In regards to social stigmas, those who are affected by chronic visible disease consider the negative consequences of disturbing the general population with their medical condition which further contributes to their apprehensiveness and thus, this highly contributes to how they perceive and identify themselves (Joachim and Acorn 244; Rimmon-Kenan 14). | The almost impersonal aspect of modern medicine often provokes individuals to construct their illness as they experience it, often in

PRIM ARY LYMPHEDEM A S TORIE S

conscious contrast to the medical “case report” where the protagonist is the illness, not the individual, whose voice is silence. The physical and psychological changes caused by illness often create a sense of discontinuity in the individual’s ‘identity’ (Rimmon-Kenan 11). Bridging the gap, making oneself available to oneself may be a conscious or unconscious motivation behind many illness narratives (Rimmon-Kenan 11). | Continuity is a form of coherence in narrative as it operates in past, present, future time. Continuity of both stories and narrative identity is destabilized by illnesses. The implicit or explicit assumption of continuity underlies the experience of disruption as one of the traumatic aspects of illness (Rimmon-Kenan 12). Disruption in this continuity has been experienced as a disconnection which acts as a veritable split in narrative identity. Rimmon-Kenan brings up the disruption of continuity in Oliver Sack’s narrative identity which was constructed by a serious leg injury. The rupture of the neurological contact between Sacks and his leg led to a disjuncture of memory and consequently to alienation and “an absolute gap” between his present and past identities: not only the leg, but “the former ‘I’ had vanished” (Rimmon-Kenan 12). | Motivated by a conscious or unconscious desire to (re)establish continuity between present and past, these narrators tend to emphasize elements of their past history that they did not stress before the illness, to create new connections among events (Rimmon-Kenan 16). | In the realignment of narrative of those diagnosed with a long-term condition, their relation between the present and a future can no longer be what they imagined or used to tell themselves before the illness. Thus, this type of narrative tends to emphasize a change and turning point in their story but also counteracts disruption as it discovers from within the present crisis a hidden potential in the past, capable of changing the future (Rimmon-Kenan 13). | These

narrative identities strongly emphasize on body image and appearance as experiences involved feelings of radical dissociation from the body, dehumanization, emptiness, and social isolation (Rimmon-Kenan 13). These findings prompt an overarching theme of feeling different in those diagnosed with chronic diseases (Rimmon-Kenan 13). There are different degrees of self-consciousness, to retell, restructure past memories and future expectations in a way that would cohere with the present, bridging the gap by creating a new kind of continuity (Rimmon-Kenan 13). I think that having heard that isolation is a main effect of body image and appearance is-

“I had a problem opening up about it to people, I still do, sometimes with new friends… it takes me a while to open up to them.” —Williams, Moffatt & Franks 283

behavioural disengagement

use of instrumental support

use of emotional support

substance use

denial

active coping

self-distraction

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self-blame

religion

acceptance

humor

planning

positive reframing

venting

PRIM ARY LYMPHEDEM A S TORIE S

top Score range 2–8 Brief-COPE, short version of the Coping Orientation to problems experienced scale.

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“With the former I find that I rally to be a support and with the latter I am re-energized in my desire to spread awareness and overcome my own insecurities stemming from lymphedema.” —Primary Participant 1

sues, generating a tightknit community through a connection of narrative stories will be vital the project’s success.

lightest flight Throughout the fall semester, my classmates and I engaged in several mind mapping activities such as the Light as Flight exercise where we brainstormed preliminary business strategies, our design principles and goals, and sketched out our thoughts about possible design solutions. We also had the opportunity to present this to our class and receive rich feedback from each other. I think that the Light as Flight exercise was beneficial because it helped me quickly flush out my ideas and remember about the types of support I had in my communities. It helped reconnect myself to the people around me and process and flush out some crazy design ideas that could actually be realistic. The word realistic is really important to this project. In design school, we’re always taught to create the most inventive design solution. However, what could really be improved would be learning and

understanding how our design solutions could be implemented in the ‘real world.’ Having had experienced my first client job a few years back made me realize that the wackiest ideas may not be accessible for the person/organization one is creating it for, as they were considered ‘blue sky.’ My major goal for this project is to make sure that it can help people in the real world, this means, to make it realistic, easily accessible and usable for people.

design pr inciples & goa ls One of the other key experiences that came out from this process was generating four preliminary design principles and goals which were developed from my interview findings and secondary research. The design principles are the primary actionable subjects that my project has to accomplish in order to successfully shift the perceptions of the users about their body image and appearance. The project goals are aims that also keep me focused on my primary goal of shifting my user’s perceptions of their body image and appearance.

PRIM ARY LYMPHEDEM A S TORIE S

Design outcomes should…

1 Reduce isolation by generating a sense of community

2 Encourage positive stories 3 Educate my primary users and their friends and family, and Healthcare professionals

4 Provide accessibility to those in remote areas because again, primary lymphedema is a rare condition with many users scattered across the globe.

Design goals aim to…

1 Boost self-image of those with primary lymphedema

2 Generate a tightknit community of my primary users

3 Improve knowledge about primary lymphedema

4 Apply narrative stories

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pages 48â&#x20AC;&#x201C;49 and top left & rightâ&#x20AC;&#x201A; Lightest Flight exercise where I brainstormed some business strategies, design principles and goals, and sketched out ideas about possible design solutions.

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development of thesis questions

1 2 3 4 5 6 7

How might communication design improve the emotional and mental well-being of adults between ages 21-30 with stage I congenital or praecox primary lymphedema to improve their quality of life? How might communication design improve the emotional and mental well-being of those between 21-30 diagnosed with primary lymphedema? How might communication design improve the emotional and psychological well-being of those between ages 21-30 diagnosed with stage 1 congenital and praecox lymphedema? How might communication design improve the emotional and psychological well-being of females between ages 21-30 diagnosed with stage 2 congenital and praecox lymphedema? How might communication design improve the perceptions of people between ages 21-30 diagnosed with stage 1-2 congenital and praecox lymphedema regarding their body image and appearance? How might communication design shift the perceptions of people between ages 22-25 diagnosed with stage 1-2 primary lymphedema regarding their body image and appearance? Uplyft is an online community for young adults between the ages of 20-35 diagnosed with PL, where they can share personal stories, build online and local communities and connections, and discover available support groups.

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primary persona young people between ages 20-35 with pl

PERSONA S

jean selmone Sex Female Age 23 Occupation Marketing intern at Spark CRM Location Vancouver BC Status Low income Education UBC Bachelor in Commerce

“What if I can’t find a stable job? There’s way too much competition out there. Plus, I need to work to get money to buy a new compression garment next month…This is just too much, I can’t stand it.”

Jean Selmone is 23 years old and works as a marketing intern at a start-up company called Spark cr m. She has recently graduated from ubc’s Sauder School of Business and is $52,000 in debt from her student loans, not including the interest that’s about to accumulate. She is under stress to find a job because she’s not confident about her abilities. In order to keep up with what she believes is normal, she tries to appear energetic and happy on the outside, but is actually really socially anxious and immensely stressed on the inside. Due to the countless questions and comments about her lymphedema whenever meeting someone new, she has grown to hide her condition by wearing baggy long sleeved clothes. She tries to wrap her arm in multi layered bandages at night to reduce the swelling in her left limb, but she doesn’t see the swelling changing immensely. She feels alone and just wants to talk to someone who can understand what she’s going through.

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secondary persona family and friends of primary persona

PERSONA S

johnny liu Sex Male Age 53 Occupation Construction Worker at Lonsdale Co. Location North Vancouver BC Status Average income

“My son has had lymphedema for all his life. I try to talk to him to give him support but how else can I help him?”

Johnny is a married father of two children and works as a construction worker. His son was diagnosed with primary lymphedema in his right leg four years ago and is now 22 years old, graduating from sfu. His son is also under pressure in securing a job as a mechanical engineer. Although Johnny’s son is planning to move to Toronto to find work, he thinks that his son is apprehensive about having the resources to care for his lymphedema. Johnny has always watched over and been supportive of his son but he wants him to stay in Vancouver so that he can help care for his lymphedema. Johnny is happy that his son is becoming independent but he is also feeling stressed because he is unsure of how to continue supporting his son if he moves into another city.

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tertiary persona lymphedema specialist

PERSONA S

dr. carey song Sex Female Age 41 Occupation Rehabilitation Doctor at Saint Paul’s Hospital Location East Vancouver BC Status Average income

“Through the activities of daily living, at home and at work, the patient’s mobility, strength, coordination and inter-personal skills are developed.”

Carey has been is a Medical Specialist and focuses on Physical Medicine and Rehabilitation. Her clinical practice includes all subspecialties of pmr. She became interested in lymphedema many years ago. Her clinical practice involves the diagnosis and management of lymphedematous conditions, both from a medical and a disability perspective. She believes that by improving their emotional and psychological well-being, their physical health will improve as well. Although she is strongly interested in this area, she is finding it hard to communicate with her patients. She has visited and read several stories of those diagnosed with primary lymphedema on various online forums and blogs to understand more about the emotional and psychological aspect of lymphedema. However, the sources are limited and thus, it has been challenging for her to gain a variety of patient perspectives.

design solutions

sharing stories My users and I discussed about how a support network with people who have PL would make them feel more secure about themselves and not alone. The healthcare professionals also believed that a support network would be beneficial in improving the userâ&#x20AC;&#x2122;s overall emotional and psychological well-being. A digital platform was suggested by both parties as the small numbers of people diagnosed with primary lymphedema are spread across the world (Primary Participant 1; Primary Participant 2). The users also believed that a support group would help them talk more openly about their experiences as the group would be the most empathetic because they can understand the feelings and experiences of having the same condition as opposed to when speaking to those without lymphedema, whether it be parents or close friends,

about their condition, they would feel less relieved as opposed to speaking to those with lymphedema (Primary Participant 1; Primary Participant 2).â&#x20AC;&#x201A; |â&#x20AC;&#x201A; To the many benefits of open dialogue within these support networks, there were also issues around the structure of the sessions. They felt like they were beneficial in the way that there is space for members to speak about their experiences, however, they thought that the discussions need to be more productive rather than looping conversations about lymphedema related problems such as lack of finances and resources in medical support for treatment and interest from doctors (Primary Participant 1). Discovering about the benefits and issues regarding local support networks has become a key point in my research.

preliminary phases of design solutions

DE SIGN SOLUTIONS

“It wasn’t until I found this website and these forums that I realized there are a lot of other folks out there facing the same problem I do. It feels so good to know that I am not alone with this condition. At last I have friends I can “talk” to about my feelings, even if we never meet in person.” —Ehrlich & McMahon 150

Through secondary and primary research, I’ve discovered that sharing stories about the user’s life and experiences with lymphedema and hearing about the stories of other people diagnosed with primary lymphedema are the most common stress relievers regarding their body image and appearance. Because primary lymphedema is a rare condition and many of the users are dispersed around the world, the concept would involve leveraging existing technologies to design an online storytelling platform for these users to share stories about their lives and experiences with lymphedema, as this has been a key point discussed by users (Participant 1; Participant 2). Talking about their stories and listening to other users’ stories has also helped reconstruct their identities and feel less alone (Participant 1; Participant 2), “It means a lot to have “friends” who know what it’s like to cope with wrapping in hot weather or to try to look stylish with swollen legs.” Spoken by Melanie (Ehrlich and McMahon 150). | On this platform, they would be able to easily access, read and up-vote posts by other users, post stories about themselves, and connect their online sites such as social media

and blogs. The concept is similar to a blog but instead of needing to create an account, which may give feelings of constraint, users are able to easily and freely post their stories to emphasize more on accessibility. | By designing an online storytelling platform, I’m hoping that this

“Sharing our joys and concerns with each other provides an outlet that we don’t have anywhere else” —Ehrlich & McMahon 150 design will not only shift the perceptions of the users regarding their body image and appearance, but create awareness about lymphedema as well. Healthcare professionals, their friends and family, and the general public will be able to visit this platform and understand more about the experiences of users. Other audiences will be able to view the user’s post from a social media site if they choose to connect their post to

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top â&#x20AC;&#x201A; Mind map of preliminary ideas to shift perceptions of body image and appearance.

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the destination site. This would not only enable people to read and share stories about lymphedema, but further promote knowledge and gain awareness for primary lymphedema. The overall voice of this online platform will be of a person diagnosed with primary lymphedema for a stronger sense of community. However, I will be contacting lymphedema organizations to collaborate to improve the credibility of the design. In the future, I’m hoping that this will not only be used by the users but available for other audiences in the lymphedema community such as those diagnosed with secondary lymphedema to shift their perceptions of their own body image and appearance.

precedence Current approaches that strive to provide a sense of community for these individuals include social networking platforms such as Facebook groups, which act primarily as spaces to share knowledge about maintaining physical health. There are also online forums where users read and post questions and answers about lymphedema-related topics. However, young adults who are ready to speak up about their stories feel secluded as there aren’t many spaces that respond to their age group and exclusively share concerns relevant to their experiences. In addition, most of the discussion topics are about secondary lymphedema, because most of the active members are affected by the condition. Blogs are the most effective precedence thus far, as they serve as online diaries for users to post their daily experiences while other users can get a more intimate understanding of their stories by reading, commenting, sharing and favouriting posts.

Samples of precedence include... Facebook Groups + https://www.facebook.com/NationalLymphedema Network + https://www.facebook.com/LIPOWIA + https://www.facebook.com/Lymphedema Community Online Forums + http://www.lymphedemapeople.com Blog Platforms + http://lymphasion.wordpress.com + http://lymphedemagirl.blogspot.ca + http://www.lymphedemacommunity.com/ blogs + http://thetypicalgirllindsay.blogspot.ca Websites + www.lymphoedema.org/lsn + www.canadalymph.ca + http://www.bclymph.org

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top left & right â&#x20AC;&#x201A; Preliminary sketches of online storytelling platform.

G N O R ST

HO PE FU L BR IGH T & FR E SH

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mood boards I created three mood boards to visualize four key words I developed from secondary and primary research strong hopeful bright & freash. The inspiration for these words came from the user’s need to feel empowered, socially supported and not alone for a sense of community, and knowledgeable through positive storytelling.

ST RONG

HOPE F U L

BR IGH T & FR E SH

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visual identity This section is the start of my collection of the different sketches and digitized versions of my logo from the fall semester. Having started this project with the name Lyft I explored a variety of typographic treatments in hand lettering and digitized type.

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top lef t & rightâ&#x20AC;&#x201A; Experimented around the idea of hand lettering to express warmth and human connection to refrain from designing with a medical aesthetic.

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top left & rightâ&#x20AC;&#x201A; Gained inspiration from the strength of slab serifs. Also tried incorporating curves from hand lettering sketches to make the visual warm and strong.

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top left & rightâ&#x20AC;&#x201A; Hand lettering on these sketches were designed to be light and curvy. However, the light strokes did not express the strength and empowerment Iâ&#x20AC;&#x2122;d like to visualize.

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lyft

lyft lyft

topâ&#x20AC;&#x201A; I digitized a few sketches and made minor adjustments. I played around with different typefaces to observe their personalities.

lyft

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lyft topâ&#x20AC;&#x201A; My current logo is based on the typeface Clarendon, as the strength of the title is emphasized by the heavy weighted and curvy features. This wordmark gives off a friendly but empowering vibration.

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lyft

the future pl ans december 2014 - april 2015

completed ethnogr a phic probe

cr e ating ethnogr a phic probe for insight on interactive features

r a pid protot y ping my interactive design to user test the interactive features

con tacting lymphedema organizations as collaborator

v isua l iden tit y

in terv iews with users and their friends and/or families, and healthcare professionals

DECEMBER

JANUARY

FEBRU

secondary research occur

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str ategizing to r a ise preliminary funds through crowdfunding platforms and donations

UARY

mediu m to high fidelit y protot y pes and constantly user testing them with the users and their friends and family, and healthcare professionals.

MARCH

APRIL

rs throughout timeline

v ictor i a l ee com mu n ic at ion design 2014 -2015

final phases of design solutions

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design concept The present system is inequitable when considering the emotional, social and psychological impact of PL on youths and how not much consideration has been given for the development of a public outreach system specifically targeting their condition. Providing an online space for connection emerged as a clear design opportunity. After exploring a variety of solutions, I focused on the design of a responsive website where these individuals can share personal stories, build connections through online and local communities, and discover available support groups at any point in their day. For the purpose of this project, I've designed a mobile version of my responsive website to create a richer and more immersive experience based on the key features: sharing stories, direct messaging, and locating available support groups. I have established three design mandates that must be present in the final outcome in order to successfully shift the primary user’s perceptions about their body image and appearance.

Design outcomes must...

1 Reduce feelings of isolation by generating a sense of community

2 Provide accessibility to those in remote areas

3 Educate the general public about PL For the purposes of this project and its given timeline, I've designed a mobile version of my responsive website to create a richer and immersive experience based on the key features. Uplyft’s home screen mirrors the interconnected lymph system by joining the isolated worlds of individuals into an immersive connected visual

galaxy. Within this space, by panning, zooming and tapping, users are able to explore other peoples’ stories and hobbies, and also see who they are following or are followed by. Users can share their written stories and related media content with a customized user group or open them to the public. They are also able to directly message each other and members of the Uplyft staff, add users to their following list, and locate available support groups to generate a stronger sense of community. In essence, Uplyft provides a community space where young individuals with PL can share their personal stories and generate dialogue; the potential benefits of this responsive website are boundless, as it could help individuals with PL shift their self-perceptions towards a more positive light, improve the self-esteem and self-acceptance, find inspiration and support through others, and much more.

implementation plan r esponsi v e w ebsite Uplyft is a highly immersive and interactive responsive website designed for cross compatibility on multiple devices and platforms such as desktop, mobile, and tablet which makes it flexible and accessible for users to use at any point of their day and cost-efficient for lymphedema organizations to develop as responsive websites are created with HTML5. | Another benefit of acquiring a JavaScript developer to generate the system with HTML5 is that it is fairly flexible as the database which acts as a content management system, would be made with a premade framework system such as MongoDB and Angular. HTML5 can also generate detailed interactions such as highlighting key words to link media into the user’s story with premade systems. | Once the responsive website has reached critical mass and been successfully

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tested on multiple platforms, the system would be user tested in Phonegap which functions as a native utility. If the system runs more efficiently and many users are thrilled about the system, Uplyft would acquire a developer to generate an application for platforms based on Android, Windows, or iOS mobile. During the first year of testing the responsive website, Uplyft would be running on donations via the main website, a Kickstarter campaign and acquiring investors to invest in the selected platform.

promotiona l pl a n I have strategized a promotional campaign to occur in the first year of implementation as it incorporates cost-efficient digital and analogue solutions that aim to encourage and motivate users to engage with Uplyft. The campaign is also strategized to spread awareness and educate people about the effects of PL. As my target audience is scattered across the world and highly engages with the internet, I have designed advertisements fit for both desktop and mobile for my Google focused advertising strategy to reach out and gather traffic. I have also designed intimately sized information cards, buttons and posters to encourage users to engage with the website. | Lymphedema specialists, support groups, friends and family are key stakeholders in my promotional campaign as they are the source of my word-of-mouth marketing technique. They would pass on the print collateral to their peers. They would also see and engage with Uplyft’s Google focused advertisements when visiting various platforms such as YouTube, Facebook, Reedit, and Google via Google’s system of locating key words relating to PL when receiving and sending out their emails. | I am focusing to use Adwords, Google’s online advertising program where I can create visual advertisements to reach people exactly when they’re

interested in Uplyft or PL. I’ve designed the Adwords to fit in dimensions that fit both mobile and desktop platforms for flexibility. Google AdWords is used to promote, raise awareness of, and increase traffic to Uplyft. AdWords accounts are managed online, which enables flexibility of creating and changing the ad campaign at any time, including the advertisement text, settings, and budget. I am also focusing to use Text advertising, the standard type of AdWords advertisements which includes a link to the website and a description or promotion of Uplyft. I have also planned to advertise sitelinks and advertisement extensions which show links to specific pages on Uplyft and beneath the text of the advertisements which help users get to what they’re looking for on Uplyft with just one click. | The print collateral would be disseminated through lymphedema specialists, local support groups, and friends and family. The posters would be placed in waiting and patient rooms in the offices of lymphedema specialists and hospitals to gain the attention of patients and their friends and family. The information cards are designed to motivate and encourage users to engage with the website and learn about the effects of PL through uplifting visual and written language. The colourful buttons which depict a flexed arm to symbolize strength and empowerment in PL would also be provided. The benefit of this exchange is the act of the supporter such as the lymphedema specialist, personally handing tangible support tools communicates their desire to help the young individual, thus developing a closer relationship between the two stakeholders.

FINAN CIAL RE Q U IREME NT S FO R RE S P O NSIVE WE BSITE AND PROMOTI O NAL C A MPAI G Nâ&#x20AC;&#x201A; This is the cost breakdown of the responsive website and promotional campaign in their first year of implementation:

minimu m v i a ble product (m v p) for the r esponsi v e w ebsite A medium fidelity prototype will be created for the purpose of raising funds for a Kickstarter Campaign. The next page is a cost breakdown based on an estimate from a professional Motion Graphic Designer.

features

est im at ed du r at io n ( hrs) x cost per ho u r = total est im at ed c ost

support from love ones ( moti on g raphi c desi g ner)

duration ( allow s 5- 7 days as buffer time)

Basic User Authentication • Username • First name • Last name • Email • Password Setting up users in home screen

20hrs x $30 = $600

20hrs x $0 = $0 4 days

10hrs x $30 = $300

10hrs x $0 = $0

20hrs x $30 = $600

20hrs x $0 = $0

Sign up completion process • Adding user’s information • Adding info about user in drag/drop fashion • Setting up categories

4 days Profile changes process • Ability to change email and password

10hrs x $30 = $300

10hrs x $0 = $0

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

30hrs x $30 = $900

30hrs x $0 = $0

4 days

Setting up simple admin panel to change

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

Testing / bug fixes/ deployment

20hrs x $30 = $600

20hrs x $0 = $0

2.5 days

160hrs x $30 = $4500

160hrs x $0 = $0

19.5 days = 2.5 weeks

• Ability to change user’s information Friends Feature • Browsing through users to add as following • Friends listing • Removing a friend Chat feature • Chatting with a friend • Chatting with non-friend including files/photos in the chat

total amount in weeks

uply ftâ&#x20AC;&#x2122;s k ick sta rter ca mpa ign The campaign aims to raise $25,000 of funding to release a high fidelity prototype to the market. Below is a cost breakdown of the campaign. uply f t â&#x20AC;&#x2122;s f u t ure p o te ntialâ&#x20AC;&#x201A; Uplyft has a potential to provide value added services that caters to social, emotional, psychological and medical needs through advertisement on the platform. This allows companies with related product or services to access a niche market is accessible in one space. We may also create and provide products catered to lymphedema (i.e. customizable compression garments with unique designs) to provide additional value to their conditions. Revenue from these streams can be used to help fund research, community based activities, social campaigns as well as hire employees to sustain the operations.

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u p lyf t ’s k i ckcsta rt er ca m pa i g n ( u kc)

est im ated bu dget

Videographer

20hrs x $30 = $600

3.5 days

$500 - $800:

21 days

Google Adwords for ukc • Cost-per-impressions (cpi) • Cost-per-click (cpc)

• #impr es. x $0.5 • #click s x $0.5

duration (a l lows 5-7 days as b uffer time)

(start from beginning of videography to end of ukc)

“Swag” goods for ukc • Buttons • Poster

$500 - $800

• T-shirt

19.5 days (start from beginning of ukc)

• Thank you cards ukc posters at healthcare facilities

$200

total budget for ukc

$2800 - $3200

21 days (start from beginning of videography to end of ukc) 24.5 days = 3.25 weeks

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s tage s normal life

awareness of onset symptoms

consults family and friends

pre-diagnosis

diagnosis

researches on google about onset symptoms

referred and speaking to a specialist (doctors office) information given about primary lymphedema

doing

gets exaggerated results

information given about life long physical maintenance

heads home takes transit/drives/walk home

checks email (sees uplyft google focused ad.)

goes on YouTube (sees uplyft google focused ad.) sees uplyft google focused ad.

consults primary doctor

given uplyft info. materials for emotional support doctor emails website to patient uplyft posters on walls

waits for diagnosis

“There are a lot of searches hinting at cancer...”

thinking

consults primary doctor

google research

“Could there be a cure?” “How am I going to see people like this?”

goes onto uplyft website

reads and checks out uplyft post card + note book

“Uplyft? Are there actually people w condition I can relate to?”

There are just too many possibilities...”

“Will I lose my friends?”

“Lymphedema doesn’t look so seriou Maybe it isn’t as bad as it seems...”

“Will I lose my boyfriend?”

“Woah...look at all these supporters!

“Am I going to die?”

“What is this going to cost me?”

“What do I really have?

“What’s going to happen to school?

feeling

“DO I HAVE CANCER?!”

“Why is this happening to me?”

“I can’t believe this is happen-

“Am I the only one who has

ing to me”

this? I feel so alone.”

“What do I do?! What’s happening to my body?” “I can’t deal with this.”

journey map The journey map provides a visual overview of my user’s actions, feelings, and thoughts during three major stages: pre-diagnosis, diagnosis, and post-diagnosis. It enables

“Maybe this is just a phase, I mean I don’t really have lymphedema...do I?”

“I feel a little bit more relieved to kno there are supporters!”

“I’m excited to see what other peopl experienced. Maybe there is hope...!”

“I’m sure it wouldn’t hurt to check th

me to strongly empathize with my users and strategize how, when and where my web design and promotional campaign can intervene in key points of their journey.

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aits for diagnosis

anxious

depressed

stressed

alone

uncertain

[primary user journe y map]

post diagnosis ( without uplyf t in initial diagnosis) check up with lymphedema specialist (doctors office)

with this

us.

s!”

ow that

le have

his

scared

attends usual support group meetup

lands onto uplyft website

see stories (main screen)

uplyft participant encourages and emails members to visit uplyft website

takes campaign materials sign in goes on internet (sees uplyft google focused ad.)

write stories

find support

about project

“Wow...there’s so many people out there like me...they’re so young too.” “These two people have the same interests as me too! Look at that!” “She sounds just like me...she’s from British Columbia too! Maybe I should connect with her.”

“I kinda want to share this post, I wonder how many others might have had similar experiences like us.” “This website looks worth it. Let’s try signing up and see what that’s like.” “Easy Peasy.”

website out, these stationary goods look pretty cool. Maybe the website will be cool too. “Maybe I’ll find someone who’s had the same experience with me. I wonder how they dealt with this stress...”

“This feels so therapeutic...it’s really relaxing...”

feel like a heavy weight has been lifted from my shoulders.”

“I’m not alone in this. There are really

“I’m so happy, I’m sure my friends will be

others out there like me. They have the same interests too.” “I’m feeling so much more relieved. I

supportive after seeing all these people with the same condition.”

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responsive website During the process of designing the responsive website I generated dozens of sketches, user tested relentlessly, and gained valuable feedback from my peers. In this section, you will find my design process behind the responsive website. From low fidelity sketch to detailed digital wireframes.

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left and rightâ&#x20AC;&#x201A; In the early stages, I began by to visualize by designing low fidelity paper mock ups for two versions of my preliminary ideas for a responsive website. The above image held the foundation of my ideas of a desktop platform. However, I developed my

second concept which was highly immersive as it was based on the key words: therapy, connectivity, community, and storytelling. I used the motion of floating bubbles to depict therapeutic interactions.

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left and rightâ&#x20AC;&#x201A; As I progressed with my galaxy concept, I began to create digital wireframes with considerations of both tap and clicking gestures when thinking about usability of the responsive website on desktop, mobile, and

tablet. I began experimenting with desktop interactivity which became a challenge when transferring the gestures on tablet and mobile. This made me switch to designing for mobile first, as you will see in the next pages.

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left and rightâ&#x20AC;&#x201A; This version became an experimental stage to see what I could come up with in a grid system. I tried moving away from the bubbles and use the shape of a lymphnode to test if users would connect with them more. However, users found the lymphnode shapes confusing and preferred the circles. I

also experimented with interations such as drag and drop in the main screen and basic tap interactions. I also played more with colour and a variety of layouts. I based this template on an iPhone 4 but found that most users preferred the iPhone 5 and thus, I began to rethink my user interface and experience.

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left and rightâ&#x20AC;&#x201A; In this version, I went back to my galaxy concept and experimented with more diverse and immersive interactions such as pan and zoom. I integrated photographs into each screen to portray human connection. I also changed my visual direction to compliment the photography and brand visuals. Based on

my the feedback from user testing, I designed a screen for direct messaging between Uplyft staff and contacts. I encountered challenges with designing a personal community screen as I had though that mimicking the home screen would create consistency. However, the repetition became confusing for users to interact with.

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left and rightâ&#x20AC;&#x201A; As I became confident with the foundations of the previous wireframes, I revised the dimensions of the screen from iPhone 4 to 5. As I began designing these wireframes, I experimented with immersive applications and desktop experiences. I was able to learn

from their user experience and interactions and gain inspiration to apply to my design. From this stage, I began to refine based on designing for immediacy as I wanted the responsive website to function as efficiently and effectively like a native application.

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left and rightâ&#x20AC;&#x201A; The key turning points of this version was making the first time userâ&#x20AC;&#x2122;s experience as friendly as possible and to make the home screen addictive for users to use so that they would continue to visit and interact with the website.

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final iteration

introduction screensâ&#x20AC;&#x201A; The purpose of the introductory screens is to welcome and invite first time users to engage with uplyft. The user reveals layers of the website by being prompted to swipe to the next screens: dynamic demonstration videos and the main webpage.

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the galaxyâ&#x20AC;&#x201A; The galaxy is the homescreen of Uplyft where users are immersed in a space filled with individuals who have primary lymphedema. Users are able to tap on other users and choose to view their stories, followers/ following, and hobbies. At anytime, users are

also able to access the other key areas of the website by tapping on the menu icon which reveals a horizontal navigation bar.

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users accounts Once the user lands on a user’s account screen, they are able to access an archive of stories, direct message them, and add them to their following list. When the user chooses to read an article, they will see that the highlighted words direct the user to similar stories relating to the selected words. The user is also able to view related photos and videos

to selected words by tapping on the media below the text. The user can like, comment on, view and reply to comments of the story. They can also directly share the story with the users they’re following or choose to share a link. Users can swipe right or tap the return icon to return to the previous screen.

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search interactionâ&#x20AC;&#x201A; Once the user taps on the search icon, a translucent screen of microcopy instructs the user to type in keywords for their search. As the user types in keywords, the system will automate words and filter stories in the

background. The user will then be able to view the filtered users and learn more about their experiences in this new space.

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profile buildingâ&#x20AC;&#x201A; Once the user lands on the sign in screen, they are prompted to sign into their existing account or sign up for an account. When the user chooses to sign up, they are brought to screens which ask for basic informa-

tion in a fun, engaging and gamified experience. For example: drag and dropping hobbies into the designated circles.

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writing storiesâ&#x20AC;&#x201A; Once the user signs up for an account, they are brought to the story archive section of their account screen and prompted to write a story. The user can type in a title and story of their choice into the appropriate

areas. The user is able to link videos and images to words by highlighting a word(s). They are also able to view and edit them. Once the user submits their story, theyâ&#x20AC;&#x2122;re able to choose the types of users to share their new entry with.

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direct messagingâ&#x20AC;&#x201A; Users are able to read messages by and send messages to other users. They can attach files or media to the message. They can also delete messages by swiping left.

Users can direct message uplyft staff to ask questions or to just get to know them.

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followers/following listâ&#x20AC;&#x201A; The user is able to view and search for users on their following list. They are also able to see and search the users who have been inspired by their stories and even follow them back. The user is able to

see the number of stories and updates of new stories on both lists. To edit the users on their following list, the user can swipe left on the selected user.

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find supportâ&#x20AC;&#x201A; The user is able to search for available support groups by typing the city, country. The geo-location of the user is not needed as users are prompted to search for their preferred city, country. This benefits users

who are also wanting to know more about how other support groups around the world provide care for their members.

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promotional campaign Every week of creating my responsive web designs, I also focused on how to promote my project. I worked on a variety of visual directions such as character design, illustration to photography and dissemination strategies. The promotional campaign became a challenge that helped me focused the feasibility of my work.

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power to the limbsâ&#x20AC;&#x201A; I began this semester figuring out what iconic figures I could use for my project that would also aid my promotional campaign. At first, I thought that having the limbs as mascots designed with a quirky and

illustrative style would strongly resonate with my primary users. However, as I progressed with this concept, I found that my users felt that the limbs were emphasizing on too much of the physical aspects of lymphedema.

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character personasâ&#x20AC;&#x201A; After debating about whether to use photographs or illustrations, I began to draw. I saw this as an experimental stage which I wanted to see my users respond to viewing real life people illustrated into posi-

tive mascots for others with PL to resonate with. However, through user testing, we discovered that it would be more effective if showing people with PL in photographs for more of a stronger human connection.

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primary lymphedema

primary lymphedema at www.uplyft.com

at www.uplyft.com An online community where people with primary lymphedema can:

An online community where people with primary lymphedema can: ⬤

share personal stories

⬤

connect and help with one another

⬤

discover available support groups

Find out more about what we’re doing + how you can be involved at www.uplyft.com

candid collateral I based this version on the concept of showing candid shots of the everyday lives people with PL to show that people with PL are normal but face everyday challenges.I also came with the tagline: share your story

⬤

share personal stories

⬤

connect and help with one another

⬤

discover available support groups

Find out more about what we’re doing + how you can be involved at www.uplyft.com

at uplyft.com, however this felt too general and not relating as strongly to my primary users. From then on I moved onto a simpler concept (see next pages for more).

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Share your story .com

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so what’s lymphedema? Lymphedema is chronic swelling that generally occurs in one of

Share your uplyft stories

your arms or legs. It’s most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment.

the two types! P rim a ry lymP he d e m a is congenital and considered rare. It’s caused by problems with the development of lymph vessels in your body. Seco n da ry lymP he d e m a is caused by a condition or procedure that damages your lymph nodes or lymph vessels. It’s more common to occur than primary lymphedema.

Share your

stories with us! u ply f t.com is an online community where people with lymphedema and their friends and family can share personal stories, connect with one another, help, and even discover available support groups. Find out more about what we’re doing + how you can be involved at www.uplyft.com.

s h a re yo u r s t o ry: u p ly f t.com

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so what’s lymphedema? Lymphedema is chronic swelling that generally occurs in one of

Share your uplyft stories

your arms or legs. It’s most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment.

Share your

s h a re yo u r s t o ry: u p ly f t.com

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Share • Connect .com

Share • Connect

.com

Share • Connect

.com

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Connecting People with Primary Lymphedema visit uplyft.com/support to learn more

symbolic print collateralâ&#x20AC;&#x201A; I designed these posters, cards, stickers and buttons based on the keywords: PL, connections, Uplyft, and community. This photo concept portrays a person diagnosed with PL using Uplyft and discovering and connecting with their community.

The button represents the strength and empowerment of the Uplyft community and shows the pride and support of PL from the person wearing it (see next page for more collateral).

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Share your uplyft stories

what’s primary lymphedema? P rim a ry lymP he d e m a is considered a rare, congenital and chronic swelling that generally occurs in one of your arms or legs. It’s caused by problems with the development of lymph vessels in your body. Below are the three types:

•

Congenital Lymphedema begins in infancy and causes lymph nodes to form abnormally.

•

Lymphedema Praecox often causes lymphedema around puberty or during pregnancy. It can also occur until age 35.

•

Lymphedema Tarda occurs rarely and usually begins after age 35.

Share your

stories with us! u ply f t.com is an online community where people with primary lymphedema and their friends and family can share personal stories, connect with one another, help, and even discover available support groups. Interested in this project? Find out more about Uplyft by emailing Victoria at Vleeway93@gmail.com.

co nne c t in g p e o p l e w i t h p rim a ry lymp he d e m a

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exhibition designâ&#x20AC;&#x201A; I experimented with designs that ranged from just showing the essentials of my project: desktop showcasing the key deliverables, take away items, and even posters. However, as I progressed, I chose

to combine exhibition deliverables such as the offline website, videos showcasing Uplyft, and promotional campaign, takeaway items: buttons, stickers, cards, and process book.

FINAL PHA SE S OF DE SIGN SOLUTION

Connecting People with Primary Lymphedema primary lymphedema

a responsive website

[prah-mer-ee lim-fi-dee-muh]

uplyft is an online community for young adults diagnosed with primary lymphedema, where they can share personal stories, build online and local communities and connections and discover available support groups.

primary lymphedema is considered a rare, congenital and chronic swelling in one of your arms or legs. It not only affects your physical well-being but social, emotional, and psychological health as well.

Carrier

8:08 AM

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Carrier

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cathy tsui

your story t ip: highlight keywords to link images and videos. Discovering the new me

Qhyperlink

8:08 AM

upload

Here’s what we’ve found in Vancouver, BC. Canada

Hi Aaron! I just signed up with Uplyft. I was wondering if you could answer some of my questions about adding friends. Thanks!

Maria Shaw West Broadway and Heather St.

Type your message here

Shannon Claude West 13th and Oak St.

sub mit

Fiona Wang West 16th and Cambie St.

send

Users can write their stories and highlight keywords to hyperlink or upload media to them.

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chelsea hong chelsea hong

Users can send and receive messages to other users and Uplyft staff for immediate conversation.

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Users can locate support groups by searching desired cities. Detailed information is accessible via tabs.

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chelsea hong chelsea hong

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Sasha

connect with one another, help, and find support. If you’re interested in

Share your story

communication design

learning about primary lymphedema

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sasha boniface

The time it all began written on march 5 –2015

with primary lymphedema and their friends and family to share stories,

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chelsea hong chelsea hong

hello there uplyft is a space for individuals

Process Book

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find support

aaron j. (uplyft team) Hi Megan. Welcome to the Uplyft community! If you have any questions just message us here. We’ll help you out at anytime.

Tell us about your story

Love and support is really what you need in these moments.

hobbies

you’re also welcome to join Uplyft.

Just be nice!

i lived with swelling in my right leg for two years before being diagnosed with primary lymphedema at the age of 22. What began as minor pooling around my knee gradually spread to my lower and upper leg, until the entire limb became too large to conceal. I was able to ignore the terrifying enlargement long enough to complete my last final exam and walk across the stage to receive a Bachelors Degree. Then I let myself break down. Fear is probably the best word to associate with the onset of my lymphedema. Never before had western medicine failed to provide an answer. Why couldn’t this disfigurement be explained after months of exploratory blood tests, X-rays, ultrasounds, heart scans? Even in my battle with Anorexia there existed a general medical consensus on treatment; but options for

special thanks photographer Silvia Sasaki industrial designer Bryce Duyvewaardt

vleeway

to be continued at ecuad’s the Show...

First time users are prompted with an introduction to Uplyft and demo to the responsive website.

Users can pan + zoom to explore other users in the galaxy and tap on them to know more about them.

lymphedema a shot in the dark. At Users can tapseem on hyperlinks which timesthem my garments provide relief, and bring to similar stories andattap they strangle me. context. Regimens of onothers media for a richer swimming, elevating, walking that seem to maintain my edema for months may suddenly lose their effectiveness. Sometimes I can correlate the change to weather, or a bad week of too much standing (perhaps coupled with an indulgent night of wearing heels sans garments), but there are times where I am at a loss to determine what I am doing wrong.

chelsea hong chelsea hong

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brand visuals The brand identity came naturally as I worked through my web and promotional campaign to figure out the essentials of my brand. This includes the projectâ&#x20AC;&#x2122;s key goals, audience, and language. I processed through dozens upon dozens of sketches and iterations. From here on, you will find the process behind Uplyftâ&#x20AC;&#x2122;s brand visuals.

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uplyft clarendon

ff scala sans

logo + display heading– clarendon

subheadings + body copy

raise a limb for primary lymphedema chaparral pro

we clocked 856 affluent pedestrians. Perhaps a re-engineering of your current world view will re-energize your online nomenclature to enable a new holistic interactive enterprise internet communication solution.

subheadings + body copy w e clock ed 856 affluent pedestrians. Perhaps a re-engineering of your current world view will re-energize your online nomenclature to enable a new holistic interactive enterprise internet communication solution.

unkerned but willing After many revisions of my project’s name, I came up with Uplyft as it represented the lightness, lymphedema, and feelings of uplifting. I continued on using clarendon as the type. to my logo as it held a strong foundation and expressed empower-

ment. I experimented with scala, chaparral pro, gill sans, and meta sans as they all had humanist features. During this process, I also experimented with illustrative elements and bright colours (see next pages for mood board).

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logo concep ts 02

uplyft

up lyft

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logo concep ts 03

coloured diaeresis with brand colours

uplyft connected and kerned -10pt with added ligature

tightly kerned letters at -54pt

uplyft ligatured kerned at -50pt

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clarendon logo + display headingâ&#x20AC;&#x201C; clarendon

connecting people with primary lymphedema

photographic + boldâ&#x20AC;&#x201A; After speaking with my primary users and having found that photography resonated much more with how they perceived and felt about their PL, I began designing my brand based on photography (see next pages for moodboard). I progressed from

sero ot

subheadings + body copy

miller process book body copy w e cl ock ed 856 affluent pedestrians. Perhaps a re-engineering of your current world view will re-energize your online nomenclature to enable a new holistic interactive enterprise internet communication solution.

basing my brand on candid moments showing the everyday lives of people with PL and their challenges, I went for a simpler approach which engaged my users through symbolism yet still showing pictures of people with PL to create that human connection.

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+190 values

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c o n n e c t i n g p e o p l e w i t h p r i m a r y ly m p h e d e m a

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logo concep ts 04

tracked at -75pt and kerned individually

customized ‘y’ terminal anchored and tapered to ‘l’

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logo concep ts 05

tracked at -80pt and kerned individually

swish ‘y’ terminal for quirky and unique effect

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Keywords Keywords Bright Bright AiryAiry Light Light Candid Candid Higher Higher contrast contrast

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appendix

APPENDIX

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RE SE ARCH E THIC S

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Bergan, John, and Nisha Bunke. “General Considerations.” Lymphedema (2011): 3-10. Print.

Peter Franks, and Christine Moffatt. “Experiences of Patients with Lymphoedema.” Journal of Lymphoedema 1.1 (2006): 16-21. Print.

Bosman, Joyce, and Els Brouwer. Impressed by You. 1st ed. Vol. 1. Reach, 2012. 1-70. Print. Conrad, Peter, and Kristin K. Barker. “The Social Construction of Illness: Key Insights and Policy Implications.” Journal of health and social behavior 51.1 (2010): S67-79. Ehrlich, Ann B., and Elizabeth McMahon. Voices of Lymphedema: Stories, Advice, and Inspiration from Patients and Therapists. 1st ed. Vol. 1. San Francisco, CA: Lymph Notes, 2007. 17161. Print. Harding, Jane E. “The Experiences of Young People with Primary Lymphoedema.” British Journal of Community Nursing 17.Sup6 (2012): S4-S11. EBSCO. Web. 14 Oct. 2014. <http:// connection.ebscohost.com/c/articles/83621556/ experiences-young-people-primary-lymphoedema>. Keen, Delia C. “Non-cancer-related Lymphoedema of the Lower Limb.” Nursing Standard 22, no. 24 (2008): 53-61. Lam, Rose, Anita Wallace, Barbara Burbidge,

Okajima, Shizuko, Akio Hirota, Emiko Kimura, Misako Inagaki, Nao Tamai, Shinji Iizaka, Gojiro Nakagami, Taketoshi Mori, Junko Sugama, and Hiromi Sanada. “Health-related Quality of Life and Associated Factors in Patients with Primary Lymphedema.” Japan Journal of Nursing Science 10.2 (2013): 202-11. Print. Joachim, G, and Acorn, S. “Stigma Of Visible And Invisible Chronic Conditions.” Journal Of Advanced Nursing 32.1 (2000): 243-248. CINAHL with Full Text. Web. 5 Nov. 2014. Rimmon-Kenan, Shlomith. “The Story of “I”: Illness and Narrative Identity.” Narrative 10.1 (2002): 9-27. Summerhill, Lindsey. “Lymphoedema Is Part of Who I Am.” Mark Allen Publishing Ltd 14.Sup5: S28–S30. Mag Online Library. Web. 14 Oct. 2014. <http://www.magonlinelibrary.com/doi/ abs/10.12968/bjcn.2009.14.Sup5.44508?url_ ver=Z39.88-2003&rfr_id=ori:rid:crossref. org&rfr_dat=cr_pub=pubmed&>. Symvoulakis, Emmanouil K., Dimitrios I. Anyfantakis, and Christos Lionis. “Primary Lower

WORK S CITED

works cited Limb Lymphedema: A Focus on Its Functional, Social and Emotional Impact.” International Journal of Medical Sciences 7.6 (2010): 35357. International Journal of Medical Sciences. Web. 8 Oct. 2014. <http://www.medsci.org/ v07p0353.htm>. Todd, Marie, John Welsh, and Deirdre Moriarty. “The Experience of Parents of Children with Primary Lymphoedema.” International Journal of Palliative Nursing 8.9 (2002): 444-51. Web. 18 Oct. 2014. Upton, Dominic, and Kazia Solowiej. “Psychosocial Aspects of Living with Non-cancer-related Lymphoedema.” Nursing Standard 25.33 (2011): 51-58. Print. Williams, Anne F., Christine J. Moffatt, and Peter J. Franks. “A Phenomenological Study of the Lived Experiences of People with Lymphoedema.” International Journal of Palliative Nursing 10.6 (2004): 279-86. PubMed. Web. 11 Oct. 2014. <http://www.ncbi.nlm.nih.gov/ pubmed/15284623>. Primary Participant 1. Personal interview. 2 Nov 2014. Primary Participant 2. Personal interview. 11 Nov 2014.

Secondary Participant 1. Personal interview. 19 Nov 2014. Tertiary GF Participant 1. Personal interview. 5 Nov 2014. Tertiary RMT Participant 1. Personal interview. 29 Oct 2014. Tertiary OT Participant 1. Personal interview. 29 Oct 2014. Tertiary OT Participant 2. Personal interview. 7 Nov 2014. Tertiary OT Participant 3. Personal interview. 10 Nov 2014. Tertiary PT Participant 1. Personal interview. 5 Nov 2014. Tertiary VA Participant 1. Personal interview. 7 Nov 2014.

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supplementary sources Bergan, John, and Nisha Bunke. “General Considerations.” Lymphedema, 2011, 3-10. Cheville, Andrea L., Charles L. McGarvey, Jeanne A. Petrek, Sandra A. Russo, Marie E. Taylor, and Saskia R.J. Thiadens. “Lymphedema Management.” Seminars in Radiation Oncology 13, no. 3 (2013): 290-301.

Jones, Kimberly A., and Marlys H. Witte. “Hereditary and Familial Lymphedema.” Lymphedema, 2011, 29-39.

Damstra, R J, and P S Mortimer. “Diagnosis and Therapy in Children with Lymphoedema.” Phlebology, 2008, 276-86.

Papadopoulou, M.-C., I. Tsiouri, R. Salta-Stankova, A. Drakou, N. Rousas, A.-V. Roussaki-Schulze, and A. D. Giannoukas. “Multidisciplinary Lymphedema Treatment Program.” The International Journal of Lower Extremity Wounds 11, no. 1 (2012): 20-27. Accessed October 17, 2014. <http://ijl.sagepub.com/content/11/1/20>.

Hardy, Denise. “Managing Long-term Conditions: Non-cancer-related Iymphoedema.” British Journal of Nursing 15, no. 8 (2006): 444-52.

Ridner, Sheila H. “Pathophysiology of Lymphedema.” Seminars in Oncology Nursing 29, no. 1 (2013): 4-11.

Horning, Kathleen M., and Jacqueline Guhde. “Lymphedema: An Under-Treated Problem.” medsurg Nursing 16, no. 4 (2007): 221-27.

Rockson, Stanley G. “Etiology and Classification of Lymphatic Disorders.” Lymphedema, 2011, 11-28.

Jäger, G., W. Döller, and R. Roth. “Quality-of-life and Body Image Impairments In Patients with Lymphedema.” Lymphology 39 (2006): 193200.

Tiwari, Alok, Koon-Sung Cheng, Matthew Button, Fiona Myint, and George Hamilton. “Differential Diagnosis, Investigation, and Current Treatment of Lower Limb Lymphedema.” Archives of Surgery 138 (2003): 152-61.

Jake Miles, Class Performance for Storytelling Level 1, Sept. 19, 2014. Dir. Jake Miles. Perf. Jake Miles. Jake Miles, Class Performance for Storytelling Level 1, Sept. 19, 2014. YouTube, 24 Nov. 2014. Web. 27 Nov. 2014. <https://www.youtube. com/watch?v=41s1HDwxXRQ>.

Todd, Marie. “Lymphoedema in Children: An Overview.” British Journal of Nursing 19, no. 7 (2010): 420-27.

Images of lymphedema models are photographed by Lymphoedema is part of who I am (2015) on pages 9, 25, 43, 67. Silvia Sasaki: Photographer of Uplyft Bryce Duyvewaardt: Industrial Designer for the exhibition at the Show.

special thank you to

throughou t this semester, I’ve had the fortunate opportunity to have constant support from the lymphedema community, my instructors Casey Hrynkow, Don Williams, and Tak Yukawa, my design colleagues and faculty mentors: Jonathan Aitken, Guillermina Noël, and Jorge Frascara at Emily Carr’s Health Design Lab. Thank you so much for your patience and support.