Video-Mediated Peer Support in an Online Recovery Community

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Can you think of a movie or a TV series that has enacted how a drinking problem (or other substance use disorder) ruins someone’s career and/or relationship(s), or even causes death? You may be thinking “This is easy! because there are so many! Unfortunately, the consequences such movies and shows depict are not purely fictional, and often reality is much worse. Substance use disorders are an illness and a severe problem all over the world. For example, a 17-year-old girl in my home country of Bangladesh killed her parents after they restricted her because they found out about her drug addiction. Horrifying, isn’t it? More than 23 million people in the United States abused alcohol and other drugs in 2014. There have been many different treatments and maintenance programs for recovery from substance abuse, among which 12-step fellowships like Alcoholics Anonymous (AA) and Narcotics Anonymous (NA) are the most popular. These are “12-step fellowships” that involve people regularly attending meetings where they sit in a circle and share about their recovery.

With the advancement of technology, this well established tradition of in-person peer-support has been made available online. There is an online community called InTheRooms that hosts more than 100 weekly video meetings for people in recovery and their friends and families. People in recovery seek to maintain anonymity and they are wary about video mediated communication in general. So how do these video meetings work, and does online recovery actually work? To answer these questions, we posed a questionnaire to InTheRooms members, and we interviewed active members to learn about their lived experiences in online meetings.

information about survey participants
Information about our survey participants

Even though InTheRooms provides many features for social communication like profiles, wall posts, status updates, private messaging, instant messaging, discussion boards, etc., members primarily participate in the community via the video meetings. According to our survey, many people in recovery are often unable to attend face-to-face meetings due to disability or other health conditions, lack of transportation, or conflict with work schedules. Clearly, online meetings fill an important gap for these people, allowing them access to recovery options that otherwise would not be available. While participants thought that online meetings are as useful as those face-to-face, they also revealed some major tensions. Therefore, video-mediated peer-support can be a beneficial feature to many life-critical online health communities. However, some challenges emerging from these tensions need to be addressed to support such meetings, and to facilitate the online peer-support process.

In face-to-face 12-step meetings, participants feel safe because they mostly know each other. In the case of online meetings, anyone who is a member of InTheRooms can join, and there are several thousands of active members! Besides, meeting attendees can choose to remain anonymous by not sharing their videos. The same aspect of  remaining anonymous was a major concern to some of our participants: so many people in a meeting they are not familiar with and they could reveal whatever they heard in a meeting outside of the community. They were worried about losing jobs, or self-esteem to other circle of friends and family members. Most participants chose the option of “selective-disclosure” instead: they made close friends in the community over time and shared key aspects of their recovery with only them or sponsors who they trusted.

Interview quotes revealing the tensions
Interview quotes revealing the tensions

The ability to attend from the comfort of one’s home is a plus for online meetings. However, our online meeting participants constantly mentioned how they missed the hugs, the handshakes, or smelling coffee; the physicality that comes with face-to-face meetings. This aspect has important implications for other online peer support groups (like PatientsLikeMe, 7 cups of tea, etc. ) that meet exclusively online. Although synchronous online means of communications have benefits over text-based ones, they should not entirely replace the face-to-face interaction. Most of our participants preferred to combine both online and face-to-face meeting attendance to get the best of both worlds.

Unlike many other online communities, there is a necessity of constructive moderation and feedback from peers in life-critical health communities. Admins or moderators of these groups should be very careful of who to ban and for what reasons. Now you may think, what if someone abuses the website by trying to flirt or to solicit dates? That definitely goes against the norms of InTheRooms. But what if a newcomer is not aware of all the traditions and gets interrupted while sharing his problems because of a silly norm violation (for example, not introducing oneself as a member of a particular 12-step fellowship)? He may decide not to go to any more meetings and that may eventually cause a relapse. Our study participants reported this type of incidents, because interpretation of norms varies based on geographic location, and people with different interpretations can join the same online meeting. Norms seemed to lie at the core of the conflict experienced by online meeting participants. So online health communities should develop a consensus on specific group norms and policies, and they should be made transparent once established.

Overall, video-mediated meetings may be a promising addition to other health peer-support communities. In case you still have doubts, I would like to conclude with a quote from one of our interview participants:

InTheRooms saved my life. I am grateful for being able to attend meetings online just by having my laptop. I don’t know what I would do without it!

And of course, if you’re interested, you can read a lot more about our study in our CSCW paper!

Children as Inventors of Happiness Technologies

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Happiness is a practice. People can achieve happiness by applying specific skills to their interaction with the world. These skills include gratitude (reflecting on and expressing thankfulness for positive aspects of one’s life), mindfulness (practicing awareness and acceptance of the present moment), and problem solving (reflecting on thoughts and feelings to find alternative interpretations and solutions). About 44% of school in the U.S. include programs that teach such social and emotional skills to children (e.g., Penn Resiliency Program), and a number of investigations have demonstrated the effectiveness of these approaches. However, one of the challenges faced by school-based programs is that they provide few (if any) opportunities for children to extend the practice of these skills to their lives outside of the classroom. Technology may help address this gap by providing engaging opportunities to revisit happiness practices outside of the classroom and integrate them into the everyday lives of children.

Prof. Stephen Schueller (Clinical Psychologist, Northwestern University) and I partnered to consider and design new technologies to support children in practicing gratitude, mindfulness, and problem solving skills. While Stephen has a great deal of expertise in positive psychology and I know a fair bit about designing technology for children, we also wanted to make sure that our approach represented children’s voices, priorities, and values. We collaborated with the Y.O.U. (Youth & Opportunity United) summer program to train twelve children in becoming “Happiness Inventors.” Through fourteen 90-minute sessions, we worked with the children to understand their definitions of happiness, to teach them age-appropriate gratitude, mindfulness, and problem solving exercises, and to provide them with the knowledge and structure to become inventors of new technologies to help kids practice happiness skills. Through these session, children brainstormed over 400 ideas and developed many of these ideas as sketches, prototypes, and videos. The video the children made documenting a few of their outcomes is below.

By conducting a content analysis of the children’s work, we found a number of important implications for future technologies aiming to support the practice of happiness skills. First, we found that children’s interpretations of positive psychology concepts like gratitude, mindfulness, and problem solving may not always match adult interpretations and perspectives of these concepts. For example, many children’s interpretations of happiness across all three concepts revolved around external influences on happiness, such as getting practical help (e.g., with homework) or avoiding unpleasant situations. These may not be typical concepts within positive psychology, but these concepts are worth considering when developing interventions for children. If a child’s mental model of happiness and how it can be achieved does not match the model forwarded by a particular intervention, the intervention’s effect may be limited for that child. Researchers should make the effort to engage with the mental models of the particular child audience and, if necessary, work on changing counterproductive belief structures before deploying positive technology intervention.

Second, the children’s designs pointed to a number of specific features and engagement approaches that may increase the appeal of positive technologies. One noteworthy example is that children often imagined technological solutions that could understand and react to various internal states, such as thoughts and emotions. Indeed, a growing number of efforts are attempting to glean psychological and emotional states from various affective computing technologies as diverse as EEG, galvanic skin response, and automated sentiment analysis on social media. Positive technologies that make use of such features may have particular appeal for children who are still learning to understand and interpret their affective states and the affective states of others. Another noteworthy aspect is in the number and diversity of approaches that the children posited for encouraging sustained engagement with interventions. While gamification and social interaction were two important approaches that have been considered in a number of previous interventions, there were also a few surprising ideas. One of these surprises was sensory engagement. Many of the children’s ideas posited that somebody could be motivated to engage with an intervention simply because it was beautiful and appealing to the senses, whether it be visual, aural, olfactory, or haptic. This is not a well-explored approach in the design of positive technologies and it would be interesting to know the smells associated with happiness (our participants suggested some, which included warm chocolate chip cookies and the smell of one’s own bed).

Finally, another design insight from this investigation emerged from observing the types of technologies that children cited in their inventions. It was clear that children were not drawn to interventions for laptops or desktops. At the very least, the implication of this is that web-based interventions for children should be designed using a mobile-first paradigm. However, we should emphasize that this is just a stop-gap solution, as even mobile-first web-based solutions struggle to achieve sustained engagement. Indeed, there may be an opportunity to increase engagement by thinking outside the box (or the computer, as the case may be here). The children in our study suggested a number of solutions that went beyond apps and websites. These instantiations included wearable accessories and apparel, toys and gadgets that may operate independently or in conjunction with a phone app, smart furniture and home infrastructure, robots and drones, and public kiosks and displays. It may be fruitful for designers to consider their positive technology interventions not as “sites” that children “visit,” but rather as tools that live alongside with them in the real physical world.

There’s a lot more in our Journal of Medical Internet Research paper, so check it out if you’re interested!

(Originally posted at: http://lanayarosh.com/2017/03/children-as-inventors-of-happiness-technologies/)

Presenting the Wikidata Human Gender Indicators

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For many years Wikipedia’s editor gender gap has been widely discussed, but its content gender gap has received less attention. This summer we presented our work in developing Wikidata Human Gender Indicators (WHGI) at OpenSym ‘16 which provides statistical insight into the composition of Wikipedia biographies through the use of Wikidata. WHGI has allowed us to research details about the character of the biography gender gap—that it is increasingly looking like the political biases of the real world—and to arm community editing groups with metrics about their work. For instance we are providing the data that allows Wikiproject Women in Red to reflect that, “[…] in November 2014, just over 15% of the English Wikipedia’s biographies were about women. Since then, we have improved the situation slightly, bringing the figure up to 16.52%, as of 9 October 2016. But that means, according to WHGI, only 232,357 of our 1,406,482 biographies are about women.”

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Investigating the Potential for Miscommunication Using Emoji

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Hey emoji users: Did you know that when you send your friend Google's grinning face with smiling eyes emoji on your Nexus, they might see Apple's grinning face with smiling eyes emoji on their iPhone? And it’s not just Google's grinning face with smiling eyes emoji; this type of thing can happen for all emoji (yes, even pile of poo emoji). In a paper (download) that will be officially published at AAAI ICWSM in May, we show that this problem can cause people to misinterpret the emotion and the meaning of emoji-based communication, in some cases quite significantly. face screaming in fear emoji, we know.

What’s more, our work also showed that even when two people look at the exact same emoji rendering (e.g., Apple's grinning face with smiling eyes emoji), they often don’t interpret it the same way, leading to even more potential for miscommunication. face screaming in fear emojiface screaming in fear emoji!

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