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Enabling Design: Modular bag with
a therapeutic arm sling for breast
cancer survivors with lymphedema.
Authors
Susan Barnwell, School of Fashion, Ryerson University, Toronto, M5B 2K3
[email protected]
Sandra Tullio-Pow, School of Fashion, Ryerson University, Toronto, M5B 2K3
[email protected]
Joyce Nyhof-Young, Department of Radiation Oncology, University of Toronto;
Department of Oncology Education, Princess Margaret Hospital, Toronto. M5G 2C4
[email protected]
Abstract
Designers generally address our practical needs, not our fears. Senses of self-worth and
of well-being are essential components in establishing and maintaining emotional
stability at times of life crisis. This paper is a report on a research project between
Princess Margaret Hospital (PMH) with the Department of Radiation Oncology,
University of Toronto and the School of Fashion, Ryerson University, Toronto, Canada.
The focus of the paper will be on the research, design, testing and manufacture of a
modular bag for cancer survivors with lymphedema. The inclusive process utilised the
research capabilities of the hospital and the design and innovative skills of the university.
The resulting product was a direct response to a clearly demonstrated need.
Keywords:
Breast cancer, lymphedema, self-image, emotional well-being,
therapeutic bag.
The challenge
When a woman is diagnosed with breast cancer she is emotionally overwhelmed by
what lies ahead.1 Modern medicine can offer some spectacular treatments allowing for
the continuation of a normal life. One aspect that is often overlooked is the sense of
emotional well being. The psychological trauma associated with the diagnosis can be
more devastating than the disease itself. Assistance in improving senses of self-worth
and of well-being are essential components in establishing and maintaining emotional
stability at times of life crisis offering hope and a much better quality of life to breast
cancer survivors with lymphedema.
Breast cancer is a prevalent health concern among women. Fortunately, breakthroughs
in medical screening and treatment over the last decade have led to increased survival
and lower recurrence rates.2 This, in turn, has promoted greater attention toward quality
of life issues faced by survivors in their journeys with, through and beyond cancer.
Lymphedema is a serious consequence of breast cancer treatment that can have major
impacts on patients’ physical, functional and psychological health.3 Worldwide, between
10 and 30% of breast cancer survivors develop lymphedema resulting from surgery or
radiation therapy. Damage to the upper extremity lymphatic system impairs fluid drainage
leading to fluid accumulation and swelling in the arm, resulting in reduced manual
dexterity and heightened surface sensitivity. Patients can become acutely aware and
sensitive to the visual characteristics of lymphedema. There is no cure for lymphedema,
only treatment.
Phase I (2005/2006)
In August 2005, the School of Fashion at Ryerson University and Princess Margaret
Hospital agreed to co-operate in a research project to identify the special challenges
faced by women cancer patients who develop lymphedema and to design a line of
clothing and accessories to meet their special needs.
Method
Patient needs were investigated through focus groups selected from the PMH population
of adult female breast cancer survivors, diagnosed with post-treatment lymphedema.
The nurse coordinator recruited patients attending the lymphedema clinic that met these
criteria. Ethics approval was obtained from the University Health Network Ethics Review
Board.
Focus group sessions were recorded, transcribed and thematically analysed.
Questionnaires were distributed at the focus groups to determine physical challenges
resulting from lymphedema.
 Key selection criteria for apparel included price, fashion, fit, comfort, and
appearance.
 Apparel restrictions.
 Characteristics of effective bags and purses that minimize stress and
irritation.
Members of the research team attended sessions as observers and note takers.
Sessions were audio-recorded, transcribed and analyzed using descriptive thematic
analysis.4 After transcription, participant comments were read and reviewed. Statement
categories emerged which were coded and grouped into themes.
Results
Compared to the general female population respondents described increased levels of
appearance anxiety. Visible arm swelling serves as a constant reminder of breast
cancer, making it difficult to move forward emotionally and physically in the survivorship
journey. Focus group participants remarked that decreased fine motor skills and range of
movement, limited their ability to dress with ease. Complaints related to ready-to-wear
clothing included too narrow sleeves and cuffs and stitched seams and harsh fabric that
irritated the skin.
They also identified everyday activities that were challenging These ranged from the
need to support the arm and difficulty with zippers and button closures, to the carrying of
all types of bags. Patients requested fashionable and comfortable clothing to camouflage
the affected arm and to enhance functional activities and social abilities. Above all, the
focus groups indicated how vitally important “feeling and looking good” were to
lymphedema patients, an observation endorsed by recent research. 5
Phase 1 – Conclusion
This study established a need for clothing and accessories based on aesthetics, comfort
and performance. In the summer of 2006 using the recommendations from the research,
faculty from the university developed a line of clothing and accessories that would help
breast cancer survivors adjust and adapt to their condition, as well as enhance their
appearance. In October 2006 The Lymphedema Line, was show cased at The American
Association of Cancer Education Conference, (Poster Presentation), San Diego and was
awarded first prize.
Phase II (2006/2007)
Phase ll included field-testing of the Lymphedema Line with hospital patients dealing
with Lymphedema. These assessments and tests generated several reports which were
used to further refine the line.6
Method
The study sample was again selected from the PMH population of adult female breast
cancer survivors, diagnosed with post-treatment lymphedema. The field testing involved
providing each participant with a complete package of garments and accessories to
wear for a period of one month. They provided regular feedback on garment fit, comfort,
styling, functionality, and serviceability. At the end of field testing, further focus group
sessions were held with all participants. Two questionnaires were distributed at the end
of the focus group sessions. The DAS24, a short form of the Derriford Appearance Scale
identified individual responses to living with problems of appearance.7
Results
Initial feedback was extremely positive. There were suggestions made for changes
related to minor fitting adjustments. The soy/cotton fabric and magnetic fasteners were
all very well received. The modular bag with a therapeutic arm sling was identified by
patients as one of the most successful items. The unique sling built into the back of the
bag enabled patients to rest their swollen hand/arm while still projecting the image of
carrying a fashionable handbag.
Figure 1; Modular bag with a therapeutic arm sling.
Participant comments regarding the modular bag
On Easing Anxiety:


“What I liked about this line is that it took away from the appearance of your arm,
and nobody would have known I had lymphedema.”
“I felt less conscious of the condition and people that didn’t know you wouldn’t
have any idea that you had it, which was great.”
On Being Social:
 “It made me feel a little less self-conscious and more comfortable.”
 “It made me feel better in the socialization and doing things.”
On Receiving compliments and Attention:
 “Actually I got more questions about the bag and “where did I get that”? It looks
great. You know it drew attention in a positive way.”
On Feeling Normal:
 “If you didn’t point out to people that you were wearing special clothing and
accessories . . . they had no idea, and then when I mentioned what it was, they
were intrigued and thought, wow this is great. . . what an interesting project, and
how nice it looked and also commented that it would be something that they
would consider buying too.”
On Feeling Good
 “…my sense of well being was really improved and it just felt good. When you
feel good, your day is good, your activities good. It doesn’t change anything I did
socially, but it made me feel better doing it. I think appearance, and the way you
feel about yourself, has a lot to do with your health and how you enjoy life, and it
certainly will help a lot of people if you get this on the market.”
Design process
In May 2007 in preparation for manufacturing the bags, we reviewed our research and
design and made the recommended modifications. The initial research for the bag
established that women with lymphedema have decreased motor skills, have problems
picking up objects and carrying the daily necessities in a suitable manor. The research
clearly indicated how vitally important “feeling and looking good” was to women with
lymphedema. However the study also established that patients did not want accessories
that looked like medical devices, they required well designed fashionable products. The
solution was to use a design process that emphasized both fashion and function.8
From the very beginning, during our contact with patients, we observed that they
supported their arm most of the time particularly when it was very swollen, often by
supporting it at the elbow with the other arm. This image was influential in developing the
concept of a therapeutic sling to be incorporated in the bag design. Our continuing
research fell into three main areas, Function, Designated Purpose, and Fashion.
Function
Ways of carrying objects both historical and cross cultural were explored. In 2005 I went
to Tokyo to see the Exhibition “Carrying Research,” sponsored by the Issey Miyake
foundation and focusing on the work of Mike Abelson, an established bag designer
whose research focus is on the world of “carrying.” He regards hands “as the essential
link between our bodies and surrounding objects.” The exhibition featured his personal,
documented research of photographs, drawings and carrying aids from various ages and
cultures.9 My meeting with Abelson was most inspiring; he explained that the human
body is imperfect so when we attempt to carry objects we must use ingenuity. So
ingenuity went to the top of my check list.
Figure 2; Design research; Mike Abelson; Yohji Yamamoto; Ma Ke.
Designated purpose
Research showed that bags were carried on different parts of the body, from back packs
to bags hanging from the waist, hips and neck, or even balancing on the head. Bags
served different purposes, slings to carry babies and young children, bags and belts to
carry tools for the work place. We looked at medical and industrial aids, industrial rigs,
climbing equipment, medical arm slings, and arm immobilizers. More ingenuity.
Fashion
We had to keep in mind that patients had requested accessories that reflected a fashion
not a medical image. This was more difficult than it sounded. We wanted to design a
bag that would look contemporary and fashionable. We looked at prominent designers
for inspirational starting points.
We discovered that Japanese designer Yohji Yamamoto and accessory company
Mandarina Duck10 had come together to produce garments that incorporated bags.
Further research led us to Chinese designer Ma Ke who was awarded the title of ‘Best
Asian Fashion Designer’ at the 2007 Elle Style Awards. In 2008 she was invited to show
her work at London’s prestigious Victoria and Albert Museum. One of her earlier
garments which displayed a multitude of pockets provided us with additional creative
thought.11
Although we worked on the idea of incorporating pockets into the garments we realized
that this limited the proposed solution to a single garment. However, the idea of multiple
pockets led us to the idea of a bag with flexible interchanging modules. Our research
also kept leading us back to the concept of a supporting arm sling. The creative solution
was to incorporate a sling discretely into the back section of the bag. This enabled
patients to rest their swollen hand/arm while still projecting the image of carrying a
fashionable accessory. On those days when the arm does not need support the sling
can carry a newspaper or magazine.
The modular bags are functional, with large lobster claws allowing one hand operation.
Maximum carrying comfort is made possible by the extra wide adjustable shoulder strap
for even distribution of weight. The bags are designed with modules which allow carrying
of one, two or three bag sections. The bag is easy to access and has an inside LED light
for improved visibility. Oversize zippers and pulls improve access. An additional belt
allows for modules to be hung from the waist for hands free carrying. The smaller bag
also has a detachable wrist strap. In addition, the bag provides an opportunity for
versatile styling and pricing and could be produced in vinyl, fabric or leather, providing a
variety of price points for this product. Style is paramount in the projection of a
fashionable image of normality. The bags are functional and respond to need by
enhancing a sense of emotional well-being.
Phase lll (2007/2008)
Phase lll addressed issues of funding, market, manufacture and promotion.
Funding
The innovation of the arm sling support incorporated into the bag enabled us to file a US
Design Patent. The potential success of the bag generated development funding from
Ryerson University and a grant from the Ontario Partnership for Innovation in
Commercialization (OPIC).
The Market
Our research indicated that a market existed for well designed, fashionable bags, for
cancer survivors with lymphedema. The potential market for the bag is the total number
of women with lymphedema plus the number with any upper limb disability issues.
According to the American Cancer Society, breast cancer rates have risen about 30% in
the past twenty-five years. Based on figures from 2002, about 1.3 million women will be
diagnosed with breast cancer annually worldwide.12 An estimated 178,480 American
women were diagnosed with breast cancer in 2007.13 The risk of developing breast
cancer increases as a woman gets older, so the number of women diagnosed with
breast cancer is expected to increase in proportion to the ageing population. Rates of
breast cancer increase with age, from 1 in 233 from age 30 through age 39, to 1 in 27
from age 60 through age 69.14 There appears to be an overall incidence of arm edema
after breast cancer therapy of 26%.15.
Manufacture
We decided to manufacture bags and distribute them for further research. Initially
manufacturing companies in Canada were investigated, costs proved to be very high for
small quantities. Contact was made with the Hong Kong Trade Development Council in
Toronto who provided a list of recommended companies for the manufacture of the bags
in Hong Kong and China. Further research was undertaken in Hong Kong to source
appropriate hardware and manufacturing possibilities. Prototypes were ordered and
checked in Hong Kong and 400 bags were manufactured and shipped to Canada.
Promotion
In late 2007 we registered the company Sansu and designed an information website to
promote and distribute the modular bags. Promotion has been mainly through
conference presentations and mailings to identified groups with links to breast cancer
and Lymphedema awareness. Sales have predominantly been in North America. We are
in the process of establishing links with the business school at the University to help in
the worldwide promotion of the bags. We hope to establish contacts with manufacturing
and/or marketing organisations that will take over the promotion and distribution of the
product. This will allow our team time to continue research on additional bags,
accessories and other items from our initial clothing line.
Conclusion
Our hospital partner in this research project reports that almost 9,000 newly diagnosed
patients are seen by them each year. It is believed that lymphedema is posed to become
a global issue. Lymphedema is disfiguring and emotionally stressful; it causes difficulties
in daily living and can lead to a lifestyle which is severely limited; it may also result in
psychological distress. Lymphedema can have long-term physical and psychosocial
consequences for patients. And so to end where we began; at times of life crisis looking
good is an integral part of feeling good about your-self. Sometimes the objects which we
choose to use and surround ourselves with can help provide a sense of improved selfesteem and well-being and can contribute to increased feelings of self-worth, so
necessary when coping with psychological trauma and maintaining personal control at
times of life crisis.
References
1. “Lymphedema is a common complication of cancer and cancer treatment and can
result in long-term physical, psychological, and social issues for patients.”
http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema
Breast cancer (BC) is the most frequent malignant disease among women. In 2007,
178,480 new cases of breast cancer were reported in America (Source: Breast Cancer
Facts and Figures, American Cancer Society) and 22,400 cases were reported in
Canada (Source: Canadian Cancer Statistics 2008, Canadian Cancer Society). In
Europe breast cancer has become the most common cancer diagnosed overall, with
429,900 new cases in 2006 (13.5% of all cancer cases), before lung cancer.
Source: WHO: International Agency for Research on Cancer. http://www.iarc.fr/
2. Passik, S.D., McDonald, M.V., (1998). Psychosocial aspects of upper extremity
lymphedema in women treated for breast carcinoma. Cancer, vol 83, no 12, 2817-2820
3. For an introduction to lymphedema and possible treatment, see;
http://www.mayoclinic.com/health/lymphedema/DS00609
4. Strauss, A.L., Corbin, J. (1998). Basics of qualitative research: Techniques and
procedures for developing grounded theory, (second edition). Thousand Oaks, CA,
Sage.
5. Chowdhary, U., & Ryan, L. (2003). Self-esteem and apparel satisfaction with
appropriate clothing value of product attributes and support groups for mastectomy
survivors. Perceptual and Motor Skills, 97, 35-44.
6. Mok, Lesley (2007). The Effect of Functional Apparel on Self-Esteem and Social
Relations.
Pai, Rohit (2007). Evaluating the Impact of Lymphedema Lines clothing on social
relations in female breast cancer survivors with lymphedema.
Poon, Katherine (2006). Lymphedema Lines: A needs assessment on functional
apparel for female breast cancer patients at Princess Margaret Hospital.
Yu, Jasmine (2007). Socioeconomic status and Lymphedema Lines; A barriers
assessment of access to functional apparel for breast cancer patients with lymphedema.
The above student research papers (Faculty of Medicine, University of Toronto) were
part of the initial research process.
7. Carr, Tony, Moss, Timothy, Harris, David, (2005). The DAS24: A short form of the
Derriford Appearance Scale DAS59 to measure individual responses to living with
problems of appearance, British journal of health psychology, vol. 10 (2), pp. 285-298.
8. There are a vast array of books and internet sources that concentrate on design
process. Many are very erudite but lack real-world focus. For a realistic appraisal of a
rational design process and its connections to design research, see;
Press, Mike, Cooper, Rachel, (2003). Research for Design, in The Design Experience.
The Role of Design and Designers in the Twenty-First Century, Aldershot & Burlington
VA, Ashgate, pp.101-134.
9. “Mike Abelson, Carrying Research,” PingMag, Tokyo, 28 October, 2005.
http://pingmag.jp/2005/10/28/mike-abelson-carrying-research/
10. http://www.ysmandarina.com/
11. Ma Ke, Wuyong (Useless) collection, V&A, Fashion in Motion live catwalk event,
2008.
http://www.vam.ac.uk/collections/fashion/fashion_motion/ma_ke/index.html
12. Breast Cancer: Statistics on Incidence, Survival, and Screening, (2008). Imaginis,
The Women’s Health Resource. Accessed, September 15, 2008.
http://www.imaginis.com/breasthealth/statistics.asp
13. Breast Cancer Facts & Figures 2007-2008, American Cancer Institute,
http://www.cancer.org/downloads/STT/BCFF-Final.pdf
14. For more information on the subject of lifetime risk of breast cancer, see
http://surveillance.cancer.gov/statistics/types/lifetime_risk.html
15. Deutsch, M, Land, M S, Begovic, M, Wieand, H, Wolmark, N, Fisher, B, (2004).
The incidence of arm edema in women with breast cancer randomized on the national
surgical adjuvant breast and bowel project (NSABP) study B-04 to radical mastectomy
versus total mastectomy and radiotherapy versus total mastectomy alone.” International
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excision and breast irradiation,” Radiology, vol. 198, no1, pp. 279-283.