A BETTER WAY TO TO LIVE WITH A CHRONIC CONDITION
Envisioning management tool supporting transition into living with endometriosis
Umeå Institute of Design | Individual MFA project | 17 weeks | 2018
In my MFA Thesis Project, I would like to investigate how interaction and service design can support endometriosis patients in the management of their condition with a focus on the quality of life.
What is endometriosis?
Endometriosis is a condition in which endometrium-like type of tissue grows outside of the uterus it and it is experienced by 10% of women in reproductive age (Aggerholm & Kerksick, 2011) and expressed itself in different forms, but there is no agreement about the underlying cause (Mangtani & Booth, 1993; Mckillop, English & Elhadad, 2017) or one well-established therapy. Actually, endometriosis is sometimes labeled ‘the missed disease’ (Mastro 2000 as cited in Denny 2004).
Symptoms may vary and can include, but are not limited to, dysmenorrhoea (painful menstruation), pain at ovulation, dyspareunia (painful sexual intercourse), abnormal bleeding, chronic pelvic pain, fatigue, and infertility. Moreover the condition is underdiagnosed (Kennedyet al., 2005 as cited in Simoens et al, 2012) with the delay in diagnosis ranging from 5 (Sepulcri and do Amaral, 2009 as cited in Culley, 2013) to 8.9 years (Fourquet et al., 2010 as cited in Culley, 2013) depending on a study. There is no cure for endometriosis, but treatment alleviating the symptoms might include analgesics, hormonal therapy, minimally invasive, radical surgery and fertility treatment (European Society of Human Reproduction and Embryology, 2013 as cited in Culley, 2013).
What does it mean that it is a "chronic condition"?
As a chronic condition, endometriosis has a negative impact on the quality of life (Jones, Jenkinson & Kennedy, 2004; Nnoaham et al., 2011; Simoens et al., 2012; Culley et al, 2013; Giuliani et al., 2016) and some patients try to control symptoms not only by medical interventions but also lifestyle choices (Cox et al., 2003c; Huntington and Gilmour, 2005; Gilmour et al., 2008; Markovic et al., 2008 as cited in Culley et al, 2013)
One of the biggest challenges patients struggle with is the feeling of loneliness and being misunderstood - many of them are described as looking healthy and therefore dismissed by their colleagues (Jones et al., 2004 and Gilmour et al., 2008, as cited in Giuliani et al., 2016 ), family and friends (Jones, Jenkinson&Kennedy, 2004) and even healthcare providers (Barnard 2001 as cited in Denny 2004). Endometriosis often
makes women feel isolated and it is hard to openly communicate all the needs, limitations or expectations to the loved ones, friends or colleagues (McCoy Cohn, 2016). Additionally, some of the endometriosis patients experience patronizing treatment from their doctors (Barnard 2001 as cited in Denny 2004; Denny, 2004; McCoy Cohn, 2016). Pain that sometimes has no physical evidence (or evidence is not easy to be found) is not taken seriously. After diagnosis quite often only one type of medical intervention is presented as a treatment, while other options are not presented at all (Vercellini, 2015; McCoy Cohn, 2016).
Shifting to including patients in decision-making
At the same time we see a shift in the medicine from treating patients as a body that needs to be fixed toward encouraging patients to be part of the decision-making process and active in their recovery (Forbat, 2009; McCarley, 2009), along with more holistic perspective on the care (Ellis, 1999). Also, the well-being of patients is more and more prominent in the discussion about chronic conditions (Stewart et al., 1989), that might not necessarily need an aggressive treatment at all times, but rather management and monitoring (Vercellini, 2015). Contrasting new trends with the current situation could yield interesting insight into new directions.
Desk and field research with patients, their loved ones and healthcare providers. There are three main topics that will be explored in that phase: management of chronic disease, behavior change (lifestyle adjustments) and communication (with healthcare providers, loved ones, colleagues etc.)
Co-creation, ideation & probing
Process of understanding how needs discovered in the first phase might be addressed. Focused on co-creation and engaging end-users.
Building, testing & reflecting
Part of the project when solutions take shape and undergo testing and evaluation.
MFA Thesis is 17-weeks long project and is still undergoing (finishes in late May 2018).
Even though this project is still undergoing I already know that it wouldn't be possible without the help of people who decided to support me throughout it. Thank you to my tutors Tara Mullaney (Veryday) and Nicholas Torretta (Umeå Institute of Design), my critical friend Piotr Kuklo, classmates, organizations advocating for patients and most importantly over 90 women living with endometriosis who generously shared their story with me.
Aggerhol M. (3D/Motion Design) & Kerksick, N. (Art Director). ( 2011, March). Endometriosis. Retrieved from https://vimeo.com/20910143
Bairey Merz, C. Noel (August 2011). "The Yentl syndrome and gender inequality in ischemic HD". Cardiology Today. Retrieved 24 November
Bairey Merz, C. Noel (December 2011). The single biggest health threat women face (Video Lecture). TEDxWomen.
Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women's lives: a critical narrative review. Human reproduction update, 19(6), 625-639.
Denny, E. (2004). Women's experience of endometriosis. Journal of advanced nursing, 46(6), 641-648.
Dusenbery, M. (2015, March 23). Is Medicine’s Gender Bias Killing Young Women?. Retrieved from https://psmag.com/social-justice/is-medicines-gender-bias-killing-young-women
Ellis, S. (1999). The patient-centred care model: holistic/multiprofessional/reflective. British Journal of Nursing, 8(5), 296-301.
Fassler, J. (2015, October 15). How Doctors Take Women's Pain Less Seriously. Retrieved from https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515
Forbat, L., Cayless, S., Knighting, K., Cornwell, J., & Kearney, N. (2009). Engaging patients in healthcare: an empirical study of the role of engagement on attitudes and action. Patient education and counseling, 74(1), 84-90.
Giuliani, M., Cosmi, V., Pierleoni, L., Recine, A., Pieroni, M., Ticino, A., ... & Simonelli, C. (2016). Quality of life and sexual satisfaction in women suffering from endometriosis: An Italian preliminary study. Sexologies, 25(1), e12-e19.
Hoffmann, D. E., & Tarzian, A. J. (2001). The girl who cried pain: a bias against women in the treatment of pain. The Journal of Law, Medicine & Ethics, 28(4_suppl), 13-27.
Jones, G., Jenkinson, C., & Kennedy, S. (2004). The impact of endometriosis upon quality of life: a qualitative analysis. Journal of Psychosomatic Obstetrics & Gynecology, 25(2), 123-133.
La Commedia Politica. (2018, January 23, 2018). Interview with Katie Joy Ussery About Endometriosis and Kratom [Blog post]. Retrieved from http://lacommediapolitica.blogspot.se/2018/01/katie-joy-ussery-endometriosis-kratom.html
Mangtani, P., & Booth, M. (1993). Epidemiology of endometriosis. Journal of epidemiology and community health, 47(2), 84.
McCarley, P. (2009). Patient empowerment and motivational interviewing: engaging patients to self-manage their own care. Nephrology nursing journal, 36(4), 409.
McCoy Cohn, S. (Producer/Director). (2016). Endo What? [Motion Picture]. USA
McKillop, M., Seckin, T., Elhadad N. (November, 2016) Qualitative Assessment of Women’s Attitudes Towards a Tracking App for Phenotyping Endometriosis. 2016 AMIA Annual Symposium, Chicago
Mckillop, M. English, S. Elhadad, N. (May, 2017). Towards Precision Medicine for Endometriosis: Dynamic Disease Characterization Through Temporal Tracking of Patient Reported Outcomes. 13th World Congress on Endometriosis (WCE), Vancouver
Nnoaham, K. E., Hummelshoj, L., Webster, P., d’Hooghe, T., de Cicco Nardone, F., de Cicco Nardone, C., ... & Study, W. E. R. F. G. (2011). Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertility and sterility, 96(2), 366-373.
Plain English. (n.d.). In Wikipedia. Retrieved January 18, 2018, from https://en.wikipedia.org/wiki/Plain_English
Simoens, S., Dunselman, G., Dirksen, C., Hummelshoj, L., Bokor, A., Brandes, I., ... & Falcone, T. (2012). The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Human Reproduction, 27(5), 1292-1299.
Stewart, A. L., Greenfield, S., Hays, R. D., Wells, K., Rogers, W. H., Berry, S. D., ... & Ware, J. E. (1989). Functional status and well-being of patients with chronic conditions: results from the Medical Outcomes Study. Jama, 262(7), 907-913.
Svedmark, E. (2016). Becoming Together and Apart: technoemotions and other posthuman entanglements(Doctoral dissertation, Umeå University).
Talbot, A.. (2018, January). Premenstrual Dysphoric Disorder & the Language of Diagnosis. http://psychnsex.com/premenstrual-dysphoric-disorder/
Vercellini, P. (2015). Introduction: Management of endometriosis: moving toward a problem-oriented and patient-centered approach. Fertility and sterility, 104(4), 761-763.
Whelan, E. (2007). ‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community. Sociology of health & illness, 29(7), 957-982.
Icons by Yu luck
Photo credit unsplash.com