How do the designs of mental health helplines influence people’s experiences with them? This paper weaves together the lived experience of 18 helpline stakeholders to understand barriers along the pathway to care.
Authors: Sachin Pendse, Amit Sharma, Aditya Vashistha, Munmun De Choudhury, Neha Kumar
Content warning: this paper discusses suicide and support systems for it. Both the paper and this blog post might be triggering.
In times of crisis, phone helplines like the National Suicide Prevention Lifeline in the US can help people reach information and care. In India, the Mental Health Care Act of 2017 affirms that all people have the right to government-funded mental healthcare. Such healthcare includes helplines, which are one of many “technology-mediated mental health support systems” (TMMHS systems).
In this work, we ask: how does the design of the Indian mental health helpline system interact with societal factors to marginalize callers’ individual, identity-based needs?
Why helplines? They are often a “point of first contact” for people trying to access mental healthcare. Previous research has shown that the first contact influences people’s experience with care. Additionally, most evaluations of TMMHS systems focus on short-term relief, not their longer-term impacts.
What is it about the longer-term impacts that we care about? Justice, and a particular conceptualization of one. The authors draw upon Amartya Sen’s The Idea of Justice. Sen emphasizes realization-focused justice (relating to whether people’s individual needs are met), rather than institutional justice; this paper focuses on the realized justice of the mental healthcare system in India.
The authors interviewed 18 helpline stakeholders (‘stakeholders’ rather than ‘users’ including people who chose not to call helplines). The interviews were virtual (thanks to COVID) and mostly over phone, but sometimes chat (to accommodate phone anxiety). Love it!
Through these interviews, we aimed to elevate the lived experiences participants had interacting with the helpline system and the broader Indian mental health system while in a state of intense distress. Towards this goal of understanding specific participant needs and experiences, questions posed to participants were centered around their perceptions and experiences using helplines in India, with a particular focus around their understanding of gaps and unmet needs …
It’s clear to me that the researchers took great care in creating this study. They include a footnote about quoting participants directly, even when they used the phrase “commit suicide” that is intentionally not used, in an effort to represent lived experience. They also asked participants if they felt okay periodically during the interviews, debriefed them afterwards, and sent them a draft of the paper.
I appreciate this level of care. This is obviously a sensitive topic, and the authors’ commitment to their participants was apparent throughout the description of the paper.
This paper has 13 pages of content, of which 7 focus on interview findings alone, so no summary can do it justice. I’ll try to cover some of the findings I found most interesting, important, or surprising.
Why helplines? Participants had varying levels of awareness of their existence, and learned about them from a variety of sources. “Most participants saw helplines as their last resort after other parts of their support network were found to be unavailable” (calling friends, calling a therapist off-hours, worrying about disturbing people).
More specifically, several people reported how speaking openly about feeling suicidal or self-harming made their friends feel uncomfortable. This often meant that they had to center their friends’ feelings (“telling them ‘don’t worry, I won’t die’ to alleviate their sudden panic”). This is notable because talking openly is a common part of suicide prevention initiatives.
One participant was surprised to see Google suggesting helplines at the top of search results for ‘how to commit suicide.’ This was how she found out about their existence. To me, this shows how important platforms are to public health (another salient example, of course, is COVID resources).
Trust mattered to some participants, but not all. Some relied on recommendations for which helplines to call or knowledge of if a helpline would provide identity-based support. Another, though, said “just give me a fucking number and I’ll just call it,” where she was looking for any source of immediate relief.
Identity was important to all participants who weren’t cis men; likewise, LGBTQ participants discussed the need for queer-affirmative volunteers and for ensuring safety of queer callers.
A common worry was whether information would be disclosed to parents, to professors, or to EMS / police. A “fear of family involvement” was mentioned by several participants. This, more than anything, aligns with personal experience.
What did people see as the purpose of these helplines? Was it achieved?
Participants cited the goal of a helpline interaction not necessarily being to return to a “a happy state,” but for the helpline volunteer to guide them to “clarity and a sense of normal.”
They hoped for immediate help in a moment of crisis, but this only rarely happened. When it didn’t, participants reported having little recourse—needing to deanonymize themselves to provide feedback, or even harrassment from the volunteers.
I’ve been thinking about algorithmic recourse a lot lately, mostly in the context of moderation and other black boxes. This paper helped remind me of the usual conception of recourse, among humans with a power differential. Building it into systems like this is an important lesson.
The first sentence of the discussion is what will stick with me:
Through investigating the lived experiences of callers, we found a key gap between how care was intended by those who support helplines, and how that same care was experienced in practice by those who needed it most.
Along various points in the pathway to care, the design of the helpline system ended up getting in the way. The endless ringing, lack of information, and uncertainty about whether helplines would actually help each contributed to this.
At first, it wasn’t clear to me how the use of the concepts niti and nyaya helped the paper. But in the discussion, when the authors specifically address how to “remove injustices,” they root this discussion in the practical, lived challenges that people faced:
Sen notes that realization-focused justice means that justice must be experienced from the perspective of individuals in need. For helplines to do justice to the needs of those they serve, they must both be accessible and also understood as accessible, so callers can pursue the care that suits their needs rather than what care happens to be available.
To this end, the authors recommend ways to destigmatize helplines and make them more accessible:
- providing information about what to expect when calling,
- communicating safety, queer-affirmative policies, and a lack of judgment, and
- having diverse volunteers.
Sen characterizes the practice of justice as being one that combines work done towards the pursuit of an ideal world (niti), and immediate work to correct injustice based on the lived experiences of those most impacted (nyaya).
I think this is worthwhile to remember: that justice requires both of these.
I’ve already said that I appreciate the care put into this paper. I can imagine how challenging it was to complete all these interviews, and especially to weave together individual experiences into a cohesive narrative.
I really love this kind of qualitative research. I think this work shows the importance of taking a holistic, justice-centered approach to understanding how mental health resources actually help people.
This paper took me a while to read, partially due to it being heavy material and partially due to distractions. But this is the first paper I’ve read outside of reading club this year, thanks to my job search, so I’m glad to have done that. Here’s to more coming soon!