ACM CSCW
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ACM CSCW

Social Computing Researchers Need to Pay Attention to Religion & Spirituality in Design (Especially in Matters of Life & Death)

Everything changes in a heartbeat when you or someone you love receives a life-threatening health diagnosis.

Research from the medical and nursing fields repeatedly shows that people turn toward religion or spirituality to cope, even if they didn’t necessarily see themselves as “spiritual” during their lives. Many people wish they could go back and apply lessons learned earlier in their lives, so that they could live more fully and be better people. What if technology could help with that? To embrace the aspects of our experiences that most provide us with a sense of meaning, hope, and fulfillment — however we each individually define that?

CaringBridge.org is a nonprofit health journaling platform that offers a free service similar to a blog, but with specialized tools and privacy controls to facilitate social support during serious or life-threatening illness. Our prior research showed that prayer support is more important to CaringBridge users than any other form of support [1]. Although HCI research has largely ignored religion and spirituality for decades [2–5], our #CSCW2021 paper follows up on this finding to ask, beyond prayer, “What is Spiritual Support and How Might It Impact the Design of Online Communities?” (Full paper here.)

Through participatory design focus groups with CaringBridge stakeholders, we derived the following definition:

Spiritual support is an integral dimension that underlies and can be expressed through every category of social support, including informational, emotional, instrumental, network, esteem, and prayer support. This dimension creates a triadic relationship between a recipient, a provider, and the sacred or significant, with the purpose of helping recipients and providers experience a mutually positive presence with each other, and with the sacred or significant.

The point is, when our aim is truly to support someone who is struggling, a fundamental underlying element of love and connection needs to transcend specific beliefs. Take prayer, for example. If you’re Christian, prayer might just be the most meaningful way someone can help you. If you’re an atheist, though, prayer could be quite an offensive way of expressing support. One implication is that in sensitive health contexts, designers might consider ways to help people represent their beliefs, so that supporters can craft expressions of care and support that respect them.

Building on this concept of expression, our results also highlight that even when spiritually supportive intentions are there, it’s difficult to respond to devastating news — so, participants wanted technological assistance with writing helpful comments. A second implication — which could span many types of online communities — is that commenting interfaces could embed mechanisms such as training resources, tips, or possibly automatic text recommendations. Future research will need to investigate how to design such features without damaging the meaningfulness and authenticity of comments.

Stakeholders also envisioned future systems that could create more immersive sensory experiences — e.g., by visualizing spiritual support networks and all the specific types of support they can provide (ps. check out this awesome viz project by Avleen Kaur on the topic!) — or that could even help people come to terms with their mortality and plan for times during and beyond their final days — e.g., by designing mechanisms that aid users to configure advance planning directives and to mindfully sculpt the digital legacies they will leave behind. Read the full paper or watch our video presentation to learn more about these fascinating implications.

I’ll close on the note that, for a topic like this, a scientific paper truly cannot convey the depth and richness of participants’ experiences. So, I worked with artist Laura Clapper (lae@puddleglum.net) to illustrate a few special quotes from our data that highlight what spiritual support means to people — both online and offline. I’ll let these stories speak for themselves, and I hope to see you at our session at #CSCW2021.

“An older woman had just been admitted, and she had a kind of a rough night and didn’t feel great. She was just near tears. An aid was in the room, and they were talking about religion. They were the same religion. And the aid got down on her knees and held the woman’s hand and she said, “Can I pray for you when I go home?” It was towards the end of the shift, and the woman, I thought she was going to cry. She just changed her whole tone. It just gave her an extra bit of hope, and I think it was a kind thing to do.” ~Nurse
“My husband was in the hospital, having had a massive motorcycle accident. He was one of those, “Will he make it for the first 24 hours? We’ll see…” And I had a friend start a CaringBridge site. He was in the ICU for almost two weeks. This is the description I came away with — it’s like riding the wave of love. That’s what it felt like. Both of us could feel this support, that was in the writing. Later, when people stop writing because you’ve gotten better, you can feel that diminishing. That was very, very tangible.” ~CaringBridge User
“For us, receiving meals was spiritual support because the people who would come to deliver food, it wouldn’t be an expectation of sitting in our house and us entertaining them. But they would just kind of give her a hug or something. And it was quick. And it was loving. And to us, it wasn’t even about the food. It was just kind of, them doing something out of love, taking time out of their day, showing that they care.” ~Caregiver
“When I was an oncology nurse, I had different experiences with patients, right before they’re dying. I had one moment when somebody had cancer, and she had been lying there, kind of unresponsive. But then this morning, she woke up, and I was like, “Hey, do you want to stand up? Let’s brush your teeth. Let’s get you cleaned up.” I got her back in bed, then her husband came, and I was like, awesome, he’s gonna see her awake, and she just kept smiling. And I was like, “What are you looking at? Do you see something?” And she’s like, “I see three beautiful beings.” And I said, “You look so peaceful,” and she goes, “I’m so peaceful.” I said, “You look happy, are you happy?” And she said, “I’m so happy.” And she ended up dying later that day, and I was like, the husband got to hear her say, “I’m happy, I’m at peace.” ~Nurse
“​​Even though I have a lot of experience providing spiritual support, one of the experiences that most sticks out to me was that my father had ALS and he was 84. The doctors said it will be relatively quick. I had been out about six weeks before he passed away, and had just started my chaplain internship. Somebody came and found me on oncology and pulled me out from a patient and said, I’m saddened to tell you this, but your dad died. And it was a… I just broke down and I said, “I thought I was ready.” This oncologist, who I didn’t think really knew who I was, or you know, was all business, stopped in her tracks and just put her arms around me and said, “Don’t worry about anything. Just go take care of yourself and your family, we’ll take care of everything else.” The night I got back from my dad’s funeral, I was on call, and I got a call at midnight, 96 year old woman, she had keeled over the family dinner. After a couple hours in the ER, doctor said, “We gotta call it, there’s not much we can do.” So we gathered the family together. So I went from caring for, to being cared for, to caring for — so, giving and receiving, all in a 72-hour period.” ~Chaplain

Citation: Smith, C. Estelle, Avleen Kaur, Katie Z. Gach, Loren Terveen, Mary Jo Kreitzer, and Susan O’Conner-Von. “What is Spiritual Support and How Might It Impact the Design of Online Communities?.” Proceedings of the ACM on Human-Computer Interaction 5, no. CSCW1 (2021): 1–42.

[1] Smith, C. Estelle, Zachary Levonian, Haiwei Ma, Robert Giaquinto, Gemma Lein-Mcdonough, Zixuan Li, Susan O’Conner-Von, and Svetlana Yarosh. “” I Cannot Do All of This Alone” Exploring Instrumental and Prayer Support in Online Health Communities.” ACM Transactions on Computer-Human Interaction (TOCHI) 27, no. 5 (2020): 1–41.

[2] Wyche, Susan P., Gillian R. Hayes, Lonnie D. Harvel, and Rebecca E. Grinter. “Technology in spiritual formation: an exploratory study of computer mediated religious communications.” In Proceedings of the 2006 20th anniversary conference on Computer supported cooperative work, pp. 199–208. 2006.

[3] Bell, Genevieve. “No more SMS from Jesus: Ubicomp, religion and techno-spiritual practices.” In International Conference on Ubiquitous Computing, pp. 141–158. Springer, Berlin, Heidelberg, 2006.

[4] Bell, Genevieve. “Messy Futures: culture, technology and research.” In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 2012.

[5] Buie, Elizabeth, and Mark Blythe. “Spirituality: there’s an app for that! (but not a lot of research).” In CHI’13 Extended Abstracts on Human Factors in Computing Systems, pp. 2315–2324. 2013.

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