Lacim - The different processes of the mediatization of health

The different processes of the mediatization of health

Parte IV

Por Maria do Carmo Pasquali Falchi, 2021.

Today we end our series of interviews, which has the aim to demonstrate, through the communication experiences of patients with Turner Syndrome (TS) and their relatives, the different processes of the mediatization of health. Remembering that these interviews are part of my thesis, titled Elaborations of the disease and of self: Communication experiences about Turner Syndrome in society undergoing mediatization, and it is part of Lacim. The idea is to show the applicability of communication dynamics by people who are within the community, and how these processes contribute to the meaning production and its circulation. For more information about the interviews and about the research, please access the first part of this series.

The following interview was made with the cofounder and representative of the Turner Syndrome Global Alliance (TSGA), Marybel Good. The TSGA is a non-profit organization in the US, which also has a page on Facebook. Its page has approximately 13.500 likes and more than 3.500 posts. It is important to say that differently from the other interviews, given through zoom meetings, this one, due the solicitation of TSGA, was given through email.

Lacim: Why did the organization create the page on Facebook? What are the objectives of the page?

TSGA: Turner Syndrome Global Alliance (TSGA) is a small, lean non-profit organization with a mission to connect science, resources and funding to the Turner Syndrome Community. We created the Facebook page to connect to the community. Our objectives were primarily:

1- to share evidence-based information and resources to girls/women with TS and their families;

2- to change the image of Turner syndrome by showing photos of real people who have TS doing things they love or with their families. The old images of TS from the text books do not reflect the reality of living with TS, and we wanted families who were learning about TS for the first time to see smart and beautiful individuals with TS and feel hopeful.

Lacim: Why did the organization choose Facebook?

TSGA: We started TSGA in 2014 and Facebook was the primary social media tool, especially for people who were of an age to be parents.

Lacim: What is the target audience of the Facebook page?

TSGA: Our target audience is women with TS and parents of girls with TS, including those with a new diagnosis. Although we sometimes copy our posts to twitter and Instagram, we do not have the person-power to be effective on these channels.

Lacim: What have been the most difficulty of creating content for the page?

TSGA: We receive a lot of photos. The biggest challenge is the time it takes to create and schedule content. One of our co-founders does this almost exclusively.

Lacim: How is the process of seeking and checking the information shared of Facebook?

TSGA: We only share information that is evidence or research based from reliable sources. In addition to this we sometime repost positive sayings and photos or create our own “lighter” content.

Lacim: Does the organization make the medical information more accessible for the patients and their families? How?

TSGA: We believe that our Facebook page educated and empowered thousands of families to be more knowledgeable about TS and to be better advocates. Prior to our Facebook page, the only way to learn information was to find a website and read all the information attached to it. By sharing short facts, we have helped families learn more about TS, empowering them to have meaningful conversations with their doctors.

Lacim: Does the organization believe that happened a change on the medical field through the communicational activities, like you do? Why?

TSGA: The change TSGA has brought to the medical field is the growth of multi-disciplinary clinics as a model of care. We definitely believe that our support in developing these clinics has elevated not only the care, but also the expectation for excellent care. By sharing posts about clinics, families now know that they can access a higher level of care if they live near a clinic or can travel to a clinic. Now, we are hoping to do the same with engagement in research through the InsighTS Registry, which we are funding. We have shared information about it on Facebook to educate the public, and bring awareness so that patients will be willing to enroll and share their data for research.

Lacim: How does the organization deal with the more sensitive topics about Turner Syndrome shared online?

TSGA: TSGA stays fact-based. Although individuals will sometimes put comments under our posts, we are not a forum for discussion, opinion, or one-on-one connection. If families reach out to us looking for information we cannot provide or needing additional support, I often refer them to some of the online discussion groups, which are informal, but a great way to connect with other women or families and to learn from others’ experiences. The most sensitive issue for women and parents in the TS community has to do with fertility. We post evidence-based information about fertility and include posts about the many ways to build a family. We try to be sensitive to the fact that many women with TS will not be able to carry a child or have a biological child. As difficult as this is, we still believe it is important to share facts and that girls and women who know about their own TS are empowered to be better advocates and make better health decisions.

Lacim:Does the organization believe that there is a risk for disinformation about TS through the content shared on multiple platforms? Why?

TSGA: There are three advocacy organizations and each is responsible and careful about the content shared. I would say that there is little risk for disinformation from these organizations. There is often incorrect information or assumptions in the informal discussion groups, but these are not organized and do not claim to be factual. Sometimes, we will jump in and share a resource, but we do not have the person-power to fact check all the discussion groups. They are not associated with TSGA.

Lacim: What strategies do you have to promote an interaction with the followers?

TSGA: Our primary strategy is to offer VIB or Very Important Butterfly photo cards for TS Awareness month in February. Individuals and families message us a photo and we make a card which we share back to them – they can then post it on all their social media. This has been a popular campaign.

Card produced for Maria do Carmo Falchi.

Lacim: How is the dynamic to answer the comments of the followers on the Facebook page?

TSGA: We try to respond to comments on our Facebook page, but it is not set up as a discussion forum. We are not notified of comments, so it is hit or miss. We do respond to messages to our page and often share resources to individuals this way.

Lacim: What does the organization believe is necessary to improve the interaction and access to information about Turner Syndrome?

TSGA: We would like to improve the understanding of the value of research and be able to tap into the strength of the community to help fund our big research project that launched this year, the InsighTS Registry. Although we do receive money from some fundraisers via Facebook, we have not been successful in using it as a fundraising platform.

Lacim: What are the contributions that the contact and the information about the syndrome can bring to the lives of the patients and their families?

TSGA: Our page definitely brings hope by sharing photos of so many individuals with TS. We also help patients and families to be empowered through knowledge and information.

Lacim: Do you believe that the communication can contribute to end the stigma about Turner Syndrome? Why?

TSGA: Yes, especially if we can get some of the information shared beyond the tight community of patients and families with TS. We have already ended much stigma by changing the perception of what it means to have TS.

Lacim: Did the organization’s perception about Turner Syndrome changed through the experience with the Facebook page? If yes, how?

TSGA: No, I don’t think so. I feel like we were in touch with the challenges of TS and the concerns of the community. We do sometimes see misinformation in the informal Facebook pages and then make a point of creating some posts around that topic to share correct information.

Lacim: How does the communication through the Facebook page contributed/ facilitated the organization’s mission?

TSGA: The Facebook page is our connection to the community and our way to share information and communicate with patients and families.

Lacim: What is the importance of, through communication, to establish a relation between science and Turner Syndrome?

TSGA: This is incredibly important. Unfortunately, many families with a new diagnosis receive misinformation even from their doctors. This is most evident in a diagnosis that comes in utero and the professional opinions and consultations families receive. Unfortunately, many families are still encouraged to terminate a pregnancy if TS is diagnosed, based on a poor understanding of the true quality of life of girls/women with TS.

Lacim: There is an interchangeability between post with motivational quotes and posts with medical information about Turner Syndrome. What is the importance of talking about these two topics?

TSGA: We include motivational quotes to be encouraging and hopeful. With Facebook, in order to have enough engagement, it is really necessary to post at least once a day, preferably more. We needed to add something to mix up the medical information posts.

Lacim: I saw that the organization, mostly, don’t share personal experiences with Turner Syndrome on the Facebook page… is this a policy of the TSGA? Why?

TSGA: I would not say it is a policy, more of a personal preference for the founders of TSGA. We understand that each individual/family has a story and that the telling of it is very healing and empowering. We have made the decision to be fact based, and therefore steer away from individual stories. We feel that TSSUS is an organization that has created a platform for sharing stories, and it is really important to us that we do not duplicate efforts or work. Also, when you give a platform for people to tell stories, it is very difficult to correct misinformation because it is part of their story, and we do not feel like we can edit their stories. It is hard to assure that all a person shares is factual, especially since the diagnosis of TS can be a very emotional time.

Lacim: Some posts have the photo of babies, girls and women with TS. What kind of care does the organization take with this kind of post?

TSGA: All of the photos we use are sent to us by individuals or families with express permission to post on social media and be used by TSGA. We feel this is really important – to show the faces of real people living with TS.

Lacim: Does the organization think that the medical/ technical information about Turner Syndrome difficult the message aimed by TSGA? Why?

TSGA: Sometimes the medical information is difficult to hear, but we feel a responsibility to elevate the community’s knowledge of TS and their ability to understand all of TS, even the hard parts. For sure, the challenges around fertility are always especially difficult for women and families, and we try to be sensitive to this, but still share the correct medical information.

Lacim: What is the importance for the families to have access and see different experiences about Turner Syndrome through digital platforms?

TSGA: I also run a local support organization in Colorado, USA, and in the past 5 years, I have seen the need for in person support diminish because of the tremendous support on social media. Girls, women, and families are connecting virtually, but also in real life, making real friendships and finding real support. This is the power of social media.

With Marybel’s perspective we end the series of interviews about the different processes of the mediatization of health. We thank the collaboration, time and availability of our four interviewees, who are an essential part of this research. Remembering that these conversations are part of the thesis who will be conclude in 2023. More information about the research are available on the articles: PLATAFORMAS DIGITAIS NA MIDIATIZAÇÃO DA SAÚDE: A SÍNDROME DE TURNER NO CANAL DO YOUTUBE BROOKE TV, MIDIATIZAÇÃO DA SAÚDE E APROPRIAÇÃO DE DISPOSITIVOS MIDIÁTICOS POR PACIENTES: O CASO DA PÁGINA DO FACEBOOK TURNER SYNDROME GLOBAL ALLIANCE e MIDIATIZAÇÃO E RECONFIGURAÇÃO DA RELAÇÃO MÉDICO-PACIENTE:EXPERIÊNCIAS COMUNICACIONAIS SOBRE SÍNDROME DE TURNER NAS PLATAFORMAS DIGITAIS.

Maria do Carmo Falchi é doutoranda em Ciências da Comunicação na Unisinos. Em sua pesquisa, vem investigando as experiências comunicacionais de pacientes com Síndrome de Turner nas plataformas digitais. Como jornalista e pesquisadora seus interesses estão em compreender os processos e dinâmicas da midiatização da saúde.