Sperm Stories: A New ART of Infertility Project

In honor of Men’s Health Month, we wanted to announce a new ART of Infertility affiliated project! We are thrilled to receive funding and support to investigate how men rely upon and use social media when experiencing infertility. This is a project that was co-designed by our social media undergraduate intern, Kristen Mahan. Kristen will be a senior this year at the University of Wisconsin-Oshkosh majoring in digital marketing. Back in the Fall of 2018, Kristen enrolled in a class taught by Maria where she expressed interest in working more as an intern with the ART of Infertility. We are thrilled to have Kristen on our team and helping us understand how we can better support men with infertility.

All of this means, we need your help! We want to know what guys want and need from social media when experiencing infertility. Much of the content out on the web is created by and for women. While this is great and starts the conversation, we need to #flipthescript and think about the other half that need support too.

Read more about the project, follow @sperm_stories on Instagram and Facebook. Message us or email at info@artofinfertility.org and participate at the end of June in a short survey that helps us understand the content that guys want. Below are a few Q&As to contextualize the project further.

“Sperman Adventures – Volume 1” a piece reflecting on male experiences of infertility.

 

 

 

 

 

 

 

 

 

 Q: Why focus on men, infertility, and social media?

Infertility is an issue that affects both women and men but is generally stigmatized as only women’s issue. Nonetheless, it is estimated that one-third of infertility cases are the result of male reproductive issues, one-third a result of female reproductive issues, and one-third either a combination of both sexes or unexplained (“How Common Is Male Infertility”, 2016). Yet, despite men representing a significant population of the infertility community, resources have been stagnant and research has found men with infertility lacking support networks and educational resources (Petok, 2015; Gannon, Glover & Abel, 2004). Such lack of targeted support and resources has led to an increase in a sense of stigma, isolation, depression, and stress in men experiencing infertility (Hanna & Gough, 2016).

This proposed study aims to intervene in the stigmatization of male infertility by creating and testing a social media campaign directed at infertile men during the month of June, which is nationally recognized as Men’s Health Month. Rationale for a social media campaign is rooted in a 2010 study that found media campaigns can greatly produce positive changes and prevent negative changes in health-related behaviors (Wakefield, Loken & Hornik, 2010). Their study advocates for additional research around health media campaigns to test the effectiveness of individualized, targeted campaigns. Given the proposed effectiveness of health media campaigns, particularly for stigmatized demographics, this study seeks to better understand the educational resources and support offered to men experiencing infertility.

Q: How do I participate?

Participation is easy and completely voluntary! If you do participate, you are eligible to receive a $10 Amazon gift card. To participate, please contact us at info@artofinfertility.org because we need you to sign a consent form. A consent form is needed because this is a project affiliated with a university. This means we will be talking and sharing our findings with other colleagues and infertility researchers. You can participate using a pseudonym or “fake name”, and we can talk more about how you may like to participate via email or a phone call. You must “sign up” to participate by July 10, 2018.

Q: Why is the ART of Infertility running this study?

The ART of Infertility does many things beyond hosting art exhibitions. Much of our mission is to learn from the stories and people we meet through our work hosting infertility art exhibitions and breaking the silence around infertility. To do this then, we work with universities to run research projects. This project is an opportunity for us to better reach men struggling to build their families. This means we welcome straight men, gay men, and single men to participate. Help us understand the content and community you need in online/social media spaces.

Also, as a study funded through an undergraduate research grant, your participation will help mentor Kristen, our intern, looking to run social media health campaigns once she graduates in 2019. This is a joint effort that seeks to benefit everyone involved!

The ART of IF / Sperm Stories team: Elizabeth (left), Kristen (center), and Maria (right).

 

 

 

 

 

 

 

Q: So when do I start?

Now! Really, posts and content have already been made “live” on both our Facebook and Instagram pages. While this research project technically lasts throughout the month of June, we will be continuing to populate and keep this account alive. We are committed to learning from our participants and building a community that talks and features male perspectives of family building. Help us continue the conversation by following these accounts today!

Mingling (Infertility) Experience Research and Friendship

While curating Cradling Creativity in Philadelphia, we had the pleasure to virtually connect with Bethany Johnson, MPhil, MA and Margaret M. Quinlan, PhD, two professors at UNC Charlotte. They graciously shared with us their research on infertility and communication. What struck us even moreso was how they were personally touched by infertility – through friendship. We want to share their story as it sheds light on both the impact of infertility on scholarship and teaching but also on the importance of friendship and support.  — The ART of Infertility

By Bethany Johnson, MPhil, MA  and  Margaret M. Quinlan, PhD

Our research journey began in a hotel room on a research trip when I (Bethany) learned an IVF cycle might have failed (they were ultimately able to freeze two embryos). I was in my third year of failed treatments then. It was a horrible morning—they called while I was in the shower at 7:38 a.m. I remember the exact time because the embryologist left a message saying “I really don’t like to leave messages on people’s voicemail,” yet I was not informed when I could expect a call, and the office wouldn’t open until 9 a.m., so there was no one for me to call back. I felt powerless, devastated and angry.

Meanwhile, Maggie was so upset for me—she asked if I wanted to just go home instead of completing our research trip, but I was desperate for something else to concentrate on. Later she told me she spent the day pulling her sweater over her expanding belly, and avoiding eye contact just in case anyone asked her about her pregnancy. She also told me later she never could have stayed and worked—she would have gotten in her car to go home and grieve. I felt so out of control that the only thing that anchored me was focusing on something else. I was so thankful she was there with me and didn’t push for us to go home.

It wasn’t the first time she was there for me in my treatment journey. Previously, she brought me a beautiful baby blanket as a gift when we got a dog—a gift I never thought I’d have a reason to receive. Then when I needed an outpatient surgery and my husband was forced to be out of town, she picked me up and drove me to the clinic, waited through the procedure, drove me to a hotel and tucked me in with meds and treats afterward, since my house wasn’t habitable that day. (It was a rough season.) But the greatest gift she gave me was during that research trip. She listened while I cried and grieved, dove into the archive with me, dreamed up research conclusions, walked miles around Brooklyn while pregnant, and then, on the drive home, opened up our research future.

The magic words were these: “Well why don’t we do a study about this?”

That was four years ago. Since then, we’ve conducted three studies, published four articles, made a documentary with graduate students and worked with our participants, a graphic designer (Bo Rumley) and an artist (Alma R. Evans of Ursa Wild Design) to create treatment support cards for people in treatment. Maggie and Alma both told me they wished they had cards to give to their friends (like me), and I wished I had them to give to others. But many of our interviewees said the same thing during our first study, and that’s how we ended up reaching out to The ART of Infertility to share what emerged from our research.

Photo credit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences

These cards eventually appeared in The ART of Infertility exhibit, along with the work of other talented artists and activists. At the opening, the cards were placed in an open mailbox, challenging viewers to imagine receiving or sending these unique messages to friends and family walking the lonely road of waiting for conception, sometimes receiving a diagnosis, and even beginning treatment or treatments. Being a part of this exhibit felt, in some ways, like the culmination of our efforts to make a difference because of my experience and the experience of so many others in our community.

 

Alma’s card in mailbox, The ART of Infertility. Photo credit: Maria Novotny

Through it all, I could count on the steadfastness of Maggie’s friendship, as well as the support of people we met throughout our work, and kept up relationships with after our studies concluded (when it was appropriate to speak with them again of course). For us, friendship and research always did and always will, overlap, even as medical statuses and experiences continue to shift and change.

Our Research on Infertility

Graduate students in “COMM 6011: Visual Ethnography” course. Photocredit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences 

The graduate students really dove into the experience and wrestled with their own ability to be allies and supporters of people diagnosed with infertility or undergoing infertility treatments. As Maddy Michalik recalled, “This was my first experience with producing a documentary, and I learned so much about artful research methodologies as well as how to better communicate with individuals walking the (in)fertility path. Initially, I was struck by the varying degree to which patients shared their journey with others — some were very open and regularly updated friends and family on social media while others only told those that needed to know. This taught me that as with any health experience, individuals will cope and seek support in different ways, and as allies, we need to be mindful of how we communicate and offer support without being invasive or insensitive.”

Nathan Pope relayed, “Our hope is that the use of an artistic medium allowed for a more immersive, emotional experience for the viewer. Seeing an individual express their feelings and hearing their spoken word may create a more reflective space for the viewer, just as interviews created a reflective space for participants and the entire project created a contemplative moment for researchers.” Witnessing students learn the process of conducting research and wrestle with these issues as they raised awareness about meaningful support has been one of the most incredible results from our projects.

Part of the documentary features infertility greeting cards that are on display in The ART of Infertility exhibits, The graduate student-produced documentary, 1 in 8: Communicating (In)fertility will also be included in the traveling art exhibit. The first draft of 1 in 8: Communicating (In)fertility https://youtu.be/7z9jfZjoS04. The film was produced by: UNC Charlotte Communication Studies Masters Students/Producers including:  Desiree Bataba, Shanice Cameron, Cameron Davis, Samantha Maine, Elizabeth Medlin, Maddy Michalik, Nathan Pope, Miranda Rouse, and Olivia Sadler, and UNC Charlotte Senior Researchers: Margaret M. Quinlan & Bethany Johnson. The impact of our draft film continues to reverberate throughout the local community and beyond.

A goal of our (Maggie, Bethany and UNC Charlotte graduate students) arts-based infertility research is to prompt future research which deepens our understanding of (in)fertility diagnosis, treatment, and support for patients. We are grateful to be included in The ART of Infertility exhibits and look forward to future collaboration.

More On Our Research on Infertility

Johnson, B., Quinlan, M. M., & Myers, J. (2017). Commerce, industry, and security: Biomedicalization theory and the use of metaphor to describe practitioner-patient communication within Fertility, Inc. Women’s Reproductive Health, 4, 89-105.

Johnson, B., Quinlan, M. M., & Evans, A. (2017).  Research based Infertility greeting cards in traveling art exhibit. The ART of Infertility- Infertility Art Exhibit, Art Therapy. http://www.artofinfertility.org/

Johnson, B., & Quinlan, M. M. (2017, Nov). Race, racism and infertility. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities]. Retrieved from https://the-vital.com/2017/11/10/racism-infertility/           

Johnson, B., & Quinlan, M. M. (2017, Nov). Infertility: Resources for family, friends, and practitioners. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities] Retrieved from https://the-vital.com/infertility-resources/

Johnson, B., & Quinlan, M. M. (2017). Insiders and outsiders and insider(s) again in the (in)fertility world. Health Communication32, 381-385.

Johnson, B., Quinlan, M. M., & Marsh, J. S. (2017). Telenursing and nurse-patient communication within Fertility, Inc. Journal of Holistic Nursing.

Johnson, B., & Quinlan, M. M. (2016). For her own good: The expert-woman dynamic and the body politics of REI treatment. Women & Language39, 127-131.

Friday News Round Up – March 11

Just a few stories that caught our eye this week.

Screen Shot 2016-03-11 at 5.03.34 PMFirst Uterus Transplant in U.S. has Failed.

The New York Times

We were saddened to hear this news but glad that the clinical trial will continue.

 

Lena Dunham

Lena Dunham

Lena Dunham hospitalized, will undergo surgery. 

CNN 

We appreciate the awareness that Lena is creating by being open about her reproductive health and hope she is recovering well.

 

Screen Shot 2016-03-11 at 5.10.49 PMScientists find cause of recurrent miscarriages.

BBC World Service

Advances in technology have decreased the cost of research, allowing scientists to discover that stem cells play a roll in recurrent miscarriages. Listen to this audio to hear about two studies that will be done to try to prevent miscarriage.