Mayara Costa Figueiredo
Clara Caldeira
Skip Abstract Section
Abstract
Infertility is a global health concern that affects countless couples trying to conceive a child. Effective fertility treatment requires continuous monitoring of a wide range of health indicators through self-tracking. The process of collecting and interpreting data and information about fertility is complex, and much of the burden falls on women. In this study, we analyzed patient-generated content in a popular online health community dedicated to fertility issues. The objective was to understand the process in which women engage in tracking relevant information, and the challenges they face. Leveraging the Personal Informatics Model, we describe women's self-tracking experiences during their fertility cycles. We discuss how a complex and highly personalized context leads to responsibility, pressure, and emotional burden on women performing self-tracking activities, as well as the role of collaboration in creating individualized solutions. Finally, we provide implications for technologies aiming to support women with fertility care needs.
- Manal Almalki, Kathleen Gray, and Fernando Martin-Sanchez. 2016. Activity Theory as a Theoretical Framework for Health Self-Quantification: A Systematic Review of Empirical Studies. J. Med. Internet Res. 18, 5 (May 2016).Google Scholar
Cross Ref
- Teresa Almeida, Rob Comber, and Madeline Balaam. 2016. HCI and Intimate Care As an Agenda for Change in Women's Health. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16), 2599--2611. Google ScholarDigital Library
- Jessica S. Ancker, Holly O. Witteman, Baria Hafeez, Thierry Provencher, Mary Van de Graaf, and Esther Wei. 2015. "You Get Reminded You're a Sick Person": Personal Data Tracking and Patients With Multiple Chronic Conditions. J. Med. Internet Res. 17, 8 (August 2015), e202.Google ScholarCross Ref
- Amid Ayobi, Paul Marshall, Anna L. Cox, and Yunan Chen. 2017. Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (CHI '17), 6889--6901. Google ScholarDigital Library
- Madeline Balaam, Rob Comber, Ed Jenkins, Selina Sutton, and Andrew Garbett. 2015. FeedFinder: A Location-Mapping Mobile Application for Breastfeeding Women. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15), 1709--1718. Google ScholarDigital Library
- N. M. van den Boogaard, E. van den Boogaard, A. Bokslag, M. C. B. van Zwieten, P. G. A. Hompes, S. Bhattacharya, W. Nelen, F. van der Veen, and B. W. J. Mol. 2011. Patients' and professionals' barriers and facilitators of tailored expectant management in subfertile couples with a good prognosis of a natural conception. Hum. Reprod. 26, 8 (August 2011), 2122--2128.Google ScholarCross Ref
- Clara Caldeira, Matthew Bietz, and Yunan Chen. 2016. Looking for the Unusual: How Older Adults Utilize Self-tracking Techniques for Health Management. In Proceedings of the 10th EAI International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth '16), 227--230. Retrieved April 25, 2017 from http://dl.acm.org/citation.cfm?id=3021319.3021354 Google ScholarDigital Library
- CDC. FastStats. Retrieved March 15, 2017 from http://www.cdc.gov/nchs/fastats/infertility.htmGoogle Scholar
- Eun Kyoung Choe, Bongshin Lee, Matthew Kay, Wanda Pratt, and Julie A. Kientz. 2015. SleepTight: Low-burden, Self-monitoring Technology for Capturing and Reflecting on Sleep Behaviors. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15), 121--132. Google ScholarDigital Library
- Eun Kyoung Choe, Nicole B. Lee, Bongshin Lee, Wanda Pratt, and Julie A. Kientz. 2014. Understanding Quantified-selfers' Practices in Collecting and Exploring Personal Data. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (CHI '14), 1143--1152. Google ScholarDigital Library
- Chia-Fang Chung, Kristin Dew, Allison Cole, Jasmine Zia, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2016. Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16), 770--786. Google ScholarDigital Library
- Juliet Corbin and Anselm Strauss. 2014. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. SAGE Publications.Google Scholar
- Felicia Cordeiro, Daniel A. Epstein, Edison Thomaz, Elizabeth Bales, Arvind K. Jagannathan, Gregory D. Abowd, and James Fogarty. 2015. Barriers and Negative Nudges: Exploring Challenges in Food Journaling. Proc. SIGCHI Conf. Hum. Factors Comput. Syst. CHI Conf. 2015, (April 2015), 1159--1162. Google ScholarDigital Library
- ABDALLAH S. DAAR and ZARA MERALI. 2002. Infertility and social suffering: the case of ART in developing countries. WHO, Geneva.Google Scholar
- Brenda Dervin. 1983. An Overview of Sense-making Research: Concepts, Methods, and Results to Date. The Author.Google Scholar
- Daniel A. Epstein, Nicole B. Lee, Jennifer H. Kang, Elena Agapie, Jessica Schroeder, Laura R. Pina, James Fogarty, Julie A. Kientz, and Sean A. Munson. Examining Menstrual Tracking to Inform the Design of Personal Informatics Tools. In Proceedings of the ACM Conference on Human Factors in Computing Systems. Google ScholarDigital Library
- Daniel A. Epstein, An Ping, James Fogarty, and Sean A. Munson. 2015. A Lived Informatics Model of Personal Informatics. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15), 731--742. Google ScholarDigital Library
- Jerry Finn and Melissa Lavitt. 1994. Computer-Based Self-Help Groups for Sexual Abuse Survivors. Soc. Work Groups 17, 1--2 (August 1994), 21--46.Google Scholar
- Adam Fourney, Ryen W. White, and Eric Horvitz. 2015. Exploring Time-Dependent Concerns About Pregnancy and Childbirth from Search Logs. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15), 737--746. Google ScholarDigital Library
- Elizabeth Gregory. 2012. Ready: Why Women Are Embracing the New Later Motherhood. Basic Books.Google Scholar
- Kerry D. Hampton, Danielle Mazza, and Jennifer M. Newton. 2013. Fertility-awareness knowledge, attitudes, and practices of women seeking fertility assistance. J. Adv. Nurs. 69, 5 (May 2013), 1076--1084.Google ScholarCross Ref
- Jina Huh. 2015. Clinical Questions in Online Health Communities: The Case of "See your doctor" Threads. CSCW Proc. Conf. Comput.-Support. Coop. Work Conf. Comput.-Support. Coop. Work 2015, (2015), 1488--1499. Google ScholarDigital Library
- Jina Huh and Mark S. Ackerman. 2012. Collaborative Help in Chronic Disease Management: Supporting Individualized Problems. CSCW Proc. Conf. Comput.-Support. Coop. Work Conf. Comput.-Support. Coop. Work 2012, (2012), 853--862. Google ScholarDigital Library
- Arvind Karunakaran, Madhu C. Reddy, and Patricia Ruma Spence. 2013. Toward a model of collaborative information behavior in organizations. J. Am. Soc. Inf. Sci. Technol. 64, 12 (December 2013), 2437--2451.Google ScholarCross Ref
- Mirim Lee, Bon-chang Koo, Hee-seok Jeong, Joongsin Park, Juhee Cho, and Jun-dong Cho. 2015. Understanding Women's Needs in Menopause for Development of mHealth. In Proceedings of the 2015 Workshop on Pervasive Wireless Healthcare (MobileHealth '15), 51--56. Google ScholarDigital Library
- Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A Stage-based Model of Personal Informatics Systems. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '10), 557--566. Google ScholarDigital Library
- Lena Mamykina, Drashko Nakikj, and Noemie Elhadad. 2015. Collective Sensemaking in Online Health Forums. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15), 3217--3226. Google ScholarDigital Library
- Lena Mamykina, Arlene M. Smaldone, and Suzanne R. Bakken. 2015. Adopting the sensemaking perspective for chronic disease self-management. J. Biomed. Inform. 56, (August 2015), 406--417. Google ScholarDigital Library
- Jaroslav Marik and Jaroslav Hulka. 1978. Luteinized Unruptured Follicle Syndrome: A Subtle Cause of Infertility*. Fertil. Steril. 29, 3 (March 1978), 270--274.Google ScholarCross Ref
- Abby McCormack. 2010. Individuals with eating disorders and the use of online support groups as a form of social support. Comput. Inform. Nurs. CIN 28, 1 (February 2010), 12--19.Google ScholarCross Ref
- Meredith Ringel Morris. 2014. Social Networking Site Use by Mothers of Young Children. In Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'14), 1272--1282. Google ScholarDigital Library
- Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-Care Technologies in HCI: Trends, Tensions, and Opportunities. ACM Trans Comput-Hum Interact 22, 6 (December 2015), 33:1--33:45. Google ScholarDigital Library
- Aisling Ann O'Kane, Sun Young Park, Helena Mentis, Ann Blandford, and Yunan Chen. 2016. Turning to Peers: Integrating Understanding of the Self, the Condition, and Others' Experiences in Making Sense of Complex Chronic Conditions. Comput. Support. Coop. Work CSCW 25, 6 (December 2016), 477--501. Google ScholarDigital Library
- Sharoda A. Paul and Madhu C. Reddy. 2010. Understanding Together: Sensemaking in Collaborative Information Seeking. In Proceedings of the 2010 ACM Conference on Computer Supported Cooperative Work (CSCW '10), 321--330. Google ScholarDigital Library
- Tamara Peyton, Erika Poole, Madhu Reddy, Jennifer Kraschnewski, and Cynthia Chuang. 2014. "Every Pregnancy is Different": Designing mHealth for the Pregnancy Ecology. In Proceedings of the 2014 Conference on Designing Interactive Systems (DIS '14), 577--586. Google ScholarDigital Library
- Laura R. Pina, Sang-Wha Sien, Teresa Ward, Jason C. Yip, Sean A. Munson, James Fogarty, and Julie A. Kientz. 2017. From Personal Informatics to Family Informatics: Understanding Family Practices Around Health Monitoring. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW '17), 2300--2315. Google ScholarDigital Library
- John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers Chalmers. 2014. Personal Tracking As Lived Informatics. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (CHI '14), 1163--1172. Google ScholarDigital Library
- Grace Shin, Eun Kyoung Cheon, and Mohammad Hossein Jarrahi. Understanding Quantified-Selfers' Interplay between Intrinsic and Extrinsic Motivation in the Use of Activity-Tracking Devices. Retrieved April 26, 2017 from http://hdl.handle.net/2142/73740Google Scholar
- Elizabeth Sillence. 2013. Giving and receiving peer advice in an online breast cancer support group. Cyberpsychology Behav. Soc. Netw. 16, 6 (June 2013), 480--485.Google Scholar
- Katarzyna Stawarz, Anna L. Cox, and Ann Blandford. 2014. Don'T Forget Your Pill!: Designing Effective Medication Reminder Apps That Support Users' Daily Routines. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (CHI '14), 2269--2278. Google ScholarDigital Library
- Claire F. Sullivan. 2003. Gendered cybersupport: a thematic analysis of two online cancer support groups. J. Health Psychol. 8, 1 (January 2003), 83--104.Google ScholarCross Ref
- Infertility | Reproductive Health | CDC. Retrieved July 6, 2017 from https://www.cdc.gov/reproductivehealth/infertility/index.htmGoogle Scholar
- WHO | Mother or nothing: the agony of infertility. WHO. Retrieved March 21, 2017 from http://www.who.int/bulletin/volumes/88/12/10-011210/en/Google Scholar
- WHO | Infertility definitions and terminology. WHO. Retrieved March 15, 2017 from http://www.who.int/reproductivehealth/topics/infertility/definitions/en/Google Scholar
- WHO | Infertility is a global public health issue. WHO. Retrieved March 15, 2017 from http://www.who.int/reproductivehealth/topics/infertility/perspective/en/Google Scholar
- WHO | Infertility. WHO. Retrieved March 15, 2017 from http://www.who.int/reproductivehealth/topics/infertility/keyissues/en/Google Scholar
- Infertility in Women - In-Depth Report - NY Times Health. Retrieved April 21, 2017 from http://www.nytimes.com/health/guides/disease/infertility-in-women/print.htmlGoogle Scholar
- SART: ART: Step-by-Step Guide. Retrieved April 24, 2017 from http://www.sart.org/patients/a-patients-guide-to-assisted-reproductive-technology/general-information/art-step-by-step-guide/Google Scholar
- Attraction to Computer-Mediated Social Support (Walther & Boyd). Retrieved April 24, 2017 from https://msu.edu/~jwalther/docs/support.htmlGoogle Scholar
- WHO | Infertility/subfertility: Controversies and innovative solutions. WHO. Retrieved April 27, 2017 from http://www.who.int/reproductivehealth/topics/infertility/guidelines/en/Google Scholar
Index Terms
- Self-Tracking for Fertility Care: Collaborative Support for a Highly Personalized Problem
Recommendations
Engaging with Health Data: The Interplay Between Self-Tracking Activities and Emotions in Fertility Struggles
Self-tracking data is often seen as a means to reflect and achieve a goal, usually focusing on positive insights and actions. Lately, some studies have discussed the negative consequences of self-tracking, suggesting that people interact with personal ...
Self-tracking for Mental Wellness: Understanding Expert Perspectives and Student Experiences
CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing SystemsPrevious research suggests an important role for self-tracking in promoting mental wellness. Recent studies with college student populations have examined the feasibility of collecting everyday mood, activity, and social data. However, these studies do ...
Self-Tracking for Fertility Care: A Holistic Approach
CHI EA '20: Extended Abstracts of the 2020 CHI Conference on Human Factors in Computing SystemsWith the recent popularity of self-tracking, individuals are increasingly using and interacting with their personal health data. Fertility is a health issue in which people often track and interact with diverse health-related data potentially associated ...
Comments