“Can I Not Be Suicidal on a Sunday?”: Understanding Technology-Mediated Pathways to Mental Health Support

Sachin R. Pendse, Amit Sharma, Aditya Vashishta, Munmun De Choudhury, and Neha Kumar (from CHI 2021)

Content Warning: This post discusses participant experiences with suicidal ideation, mental distress, and mental illness.

From Child Line to the emergency lines, from local hospital lines to senior citizens helplines, it is not uncommon to see helpline-based initiatives throughout India. Helplines are ubiquitous and often framed as being accessible forms of addressing care for a variety of issues. In the wake of the global COVID-19 pandemic, community organizations were quick to create and circulate numbers to support people in need of help.

A list of helpline numbers used by volunteers to direct callers to a mental health helpline in Kerala

Mental health helplines are no different, and as past work has noted, there are dozens of helplines that an individual can call when in distress. Mental health helplines largely began in India as community-based crisis centers based out of major cities in the late 1970s and early 1980s. Similar to their creation in the U.S., these centers began as broad (face-to-face) crisis prevention centers and later transitioned to also doing crisis support over the phone. Centers in India continue to provide face-to-face and walk-in services for those who are feeling distressed, and will often serve as conduits to a broader range of forms of support, occasionally referring people to other helplines, counselors, or other resources as necessary. However, though helplines can provide people with information about other resources, all actions taken by helplines are done with caller consent. Community-based mental health helplines in India do not call close contacts of the caller, emergency services, or the police under any circumstances unless the caller has explicitly agreed that they want action to be taken. Though volunteers and callers remain anonymous to one another, in many cases, helpline volunteers will form support relationships with callers. Callers will call back to speak to the same volunteer to update them on their progress in tackling a specific issue, and helpline volunteers will call callers (with consent) as a follow-up to a previous call to check in on their well-being.

Our work from CHI 2020 profiled how the different backgrounds of volunteers influenced their ability to quickly help callers who were in distress. Many volunteers had lived experience with mental distress or loss from suicide, and were eager to help others who had similar experiences. Given the diversity of language and culture in India, volunteers also found themselves making immense use of their own cultural background and local knowledge to help callers. Shared community, shared context, and shared identity were not solely complementary to the work done by volunteers. In the case of helpline-based support from passionate and driven volunteers, these factors were crucial.

But what happens when someone is feeling intensely distressed or suicidal and decides to try a helpline number?

The search results provided by Google when one searches a means of suicide in India.

What happens after one searches for a means of suicide on Google and is recommended a number? What are the pathways that people take from feeling distressed to finding care? In our work from CHI 2021, we look more deeply at the lived experiences of those who are experiencing distress and how they navigate different technical and societal barriers as they journey on a pathway towards finding care that meets their individual (and often urgent) needs. We ask: how does the design of the Indian mental health helpline system interact with societal factors to marginalize callers’ individual, identity-based needs?

I didn’t even care to see what helpline it was — I just found the number and kept on dialing, kept on calling them. But they were not picking up, so I went back to read what was written in the description. It said it was Monday to Saturday. And I remember, it was Sunday. 9PM-ish. So I was like, what the fuck? Are you kidding me? Can I not be suicidal on a Sunday? And I didn’t know about this before — I thought all the helplines are 24/7. — Juhi

To analyze how the technical design of the Indian mental health helpline system intersects with identity-based factors to marginalize individual care needs, we leverage a design justice approach, drawing on work from the Design Justice network and Sasha Costanza-Chock. We also draw on Amartya Sen’s writings on the gaps between institutional justice and justice as experienced. Though the Mental Health Care Act of 2017 establishes that every person living in India is institutionally entitled to accessible and government-subsidized mental health care, and volunteers are enthusiastic and passionate about providing support to people in distress, our participants described their lived experiences being unable to access or being excluded from different mental health resources, including community-based helplines.

Participants described to us a process in which they were feeling exceptionally distressed or experiencing intense suicidal ideation, had exhausted all other available resources (such as calling friends or family members), and decided to try a helpline number. Participants found helpline numbers through seeing them being used in media, having been recommended them by their college, or from searching a means of suicide on Google and being recommended a helpline number.

In many cases, this helpline number simply did not work or work consistently. Participants described a process of iteratively trying each helpline number they could find and being met with a busy tone, a constant ring that would never end, or a message that they were calling out of hours or that the line was switched off. Several participants noted their belief that mental health helplines were always accessible, and joked about their surprise that this was even possible. One participant noted that it was the “teatime joke of the day,” that even the mental health helplines would not pick up her call. Other participants described calling out of a lack of other financial resources (with one participant even noting her desire for a scholarship for mental health needs), and only calling when in extreme distress.

Calling a helpline was not easy for the participants we spoke to, and was often fraught with fear of the implications of calling for support — one participant noted her fears that the volunteer might call the police or their family without her consent. When people did not have good experiences with helplines, they did not have any method of recourse, as getting in touch with a helpline was difficult enough alone, let alone calling one solely to leave feedback. Participants also described to us their reluctance to try other forms of mental health care after poor experiences with helplines.

We also found how the care needed by those in distress was influenced by the identities that they held, including class, caste, gender, and sexual identity. With little information about how helplines work and a common belief that helplines were completely inaccessible, participants who identified as members of the LGBTQ community expressed a fear that they might be judged for their sexual or gender identity. Additionally, participants emphasized the savarna nature of how support was given on mental health helplines, and noted the need for caste-conscious methods of providing support. In the absence of accessible care, participants would often rely on friends with shared identities or lived experiences.

From our interviews, we make several recommendations towards making the end-to-end pathway from distress to care via helplines more just and inclusive. In particular, on a technical level, we recommend:

1. Signaling Wait Time: Low-cost systems that estimate and report the wait-time associated with matching a caller to an agent poised to answer their call have been used in other domains, and would be a welcome addition to the mental health helpline system. Additionally, call-backs could be used (with caller consent) or text messages with resources while a caller waits.
2. Intelligent Call Routing: Interactive IVR-based systems could potentially be used to walk participants through grounding exercises with their consent. Predictive modeling of caller behavior used to efficiently route callers to the most free center in other domains could also be leveraged here
3. Supporting Pathways to Care: Several participants recommended the existence of linkages with other forms of care for those who want more consistent care than what helplines could provide. These linkages might look like a separate menu for callers that provides location-specific recommendations for affordable therapists endorsed by the helpline, or specific referrals to other helplines or resources, such as a helpline specific to gender identity or sexual orientation (with caller consent).
4. Mechanisms for Feedback: Potential feedback mechanisms based on participant recommendations might include a separate number in which callers can anonymously leave open-ended feedback, automated text messages that ask the participant to report how they feel after some period of time, or a simple post-call question of whether the call made the caller feel “safe.”

We also make recommendations for strategies that community organizations can use to make helplines more just and inclusive:

1. More Public Information About Calling Experience/Caller Safety: Participants described having little background information about what calling a helpline would be like, and did not know any of the internal policies that helplines have around respecting caller consent. Community organizations could produce short material that describes exactly what happens after one calls a helpline that can be placed with helpline numbers at the bottom of news articles that describe deaths from suicide and public resources.
2. Volunteer Backgrounds and Diversity: We encourage community organizations that oversee helpline volunteer recruitment to target recruitment to members of marginalized communities (e.g. the Bahujan community or the queer community), and incorporate their experiences when designing policies on how helpline counseling is conducted.

Have questions? Interested in learning more about this work? Email sachin.r.pendse@gatech.edu with subject line “Helplines Study: Information Request.”