A guest post by Heather Kugelmass. If you are interested in submitting a guest post or becoming a regular contributor, email email@example.com.
How do I approach the people wearing white bead necklaces? At the American Foundation for Suicide Prevention’s (AFSP) annual awareness-raising walk, a 10-hour overnight trek through 17 miles of Philadelphia’s quiet streets, I interviewed people whom I identified by the color of their “honor beads.” I spoke to guilt-ridden oranges (lost a sibling), confused golds (lost a parent), bold greens (struggled personally), stoic silvers (lost a military member), compassionate purples (lost a relative or friend), and heart-broken reds (lost a spouse). The white beads were donned by parents who lost a child to suicide. They usually walked in pairs, except for the rare walker whose white beads were tangled with red ones.
I was there to investigate the rhetoric of suicide-related stigma and deservingness of care. As a quantitative researcher embarking on a qualitative project for the first time, I knew that I would encounter challenges. I prepared academically by reading perspectives on semi-structured and unstructured interviews, how many cases are sufficient, subjectivism, etc. I also anticipated physical challenges and “trained” accordingly – writing legibly while walking and talking; jogging with my headband flashlight securely attached; and maintaining eye contact while looking out for curbs, uneven pavement, and other obstructions. (I didn’t master the last one: I tripped over a bicycle rack before reaching the 1-mile mark and I’m pretty sure that accepting Band-Aids from subjects is not standard protocol).
What I did not anticipate was the crying I witnessed and the ethical questions that it prompted. Can I hug my distressed subjects? “Do no harm,” IRB regulations insist. Surely, I told myself, withholding norm-consistent comfort is less ethical than offering it. If I end the interview before comforting the subject, I reasoned, then I would be ethically in the clear. I interpreted crying as an indication of distress and stopped interviews immediately. Yet, after several interviewees insisted that we continue, assuring me that the interview was cathartic, my ambivalence reemerged. Suddenly, the IRB’s onerous restrictions, which I had resented weeks ago as I crafted my oral consent script, seemed woefully insufficient.
Lack of consent was not a problem; rather, it was over-consent that introduced complications. Some subjects pleaded with me to publish the interviews, desperate for academic attention to their personal cause. I tried to extricate myself in a compassionately noncommittal manner – one that was honestly, albeit unintentionally, unrehearsed. “Thank you for sharing your story with me. I’m very sorry for your loss. Have a good walk.” Voice recorder off. Swig of Gatorade. Repetition of the refrain, “Researchers don’t cry in the field” – quickly followed by a silent self-reproach, “Researchers also don’t talk to themselves aloud in the field. Now stop stalling.”
Along with beads, the 2,000 walkers before me wore wristband flashlights that literally illuminated their potential as research subjects, but I hesitated. I found excuses to circumvent the white beads in particular: they are deep in conversation, they look tired, I’ll just sprint to catch up with them later. Caffeine did not lift the haze concealing the ethical boundaries. The risk of inflicting distress seemed unavoidable. But was I more concerned about protecting my subjects from an emotionally difficult experience, or shielding myself from it, possibly at the expense of my sample size and representativeness?
Qualitative sociologists study patients with terminal illness and survivors of domestic violence, among many other vulnerable populations not covered by the “protected” human subjects status. I have newfound respect for how they navigate the ethical dilemmas that arise during the course of their work. And me? I’ll stick with subjects who come in spreadsheets.
For additional context, watch AFSP’s “Overnight Honor Bead Video” here.
This research was funded by the Center for Health and Wellbeing at Princeton University. The author can be reached via email at firstname.lastname@example.org