Researching Through Loss

By Stacy Torres and Brittney Pond

Brittney Pond is a PhD student at the University of California, San Francisco and is a Co-Assistant Director of the Emancipatory Sciences Lab

As qualitative researchers who study older adults and those who care for them, paid and unpaid, our own grappling with loss, grief, and illness surfaces for us throughout the research process, from conceiving a study to writing up results. Few road maps exist for navigating this form of scholarly emotional labor.

For me, Brittney, as a first-generation college student and now a graduate student, the questions I ask about equity in aging and care work largely stem from growing up in a medically underserved area. For my dissertation I’m conducting semi-structured interviews with U.S. home care workers about their work experiences throughout the COVID-19 pandemic.

I’ve encountered difficult stories of loss, illness, and death throughout the research process, including data collection, listening to audio recordings, and reading through transcriptions. Their accounts pulled at unanticipated personal memories of loss and illness. Some workers discussed their clients or family members living with dementia, stirring memories of my grandfather’s 2019 death from Alzheimer’s disease. Listening to their experiences also recalled fresh memories of my father’s kidney cancer diagnosis, less than 6 months ago.  Their stories helped me reflect on the support I provided as   as I moved through the medical system as a family member while also studying medical institutions and systems.

As I take in participants’ experiences regarding death and illness about mothers, fathers, siblings, grandparents, and clients, I’ve learned the importance of “being present” for myself in these moments and beyond. For me, being present means giving myself space, allowing time for reflection, and acknowledging deep or difficult feelings and memories. Writing is a place for honoring and amplifying participants’ voices, stories, and lived experiences and for processing my own feelings and thoughts as a researcher and as a person. This journey occurs not only in analytic writing but also through writing memos, personal journaling, and writing exercises.

For me, Stacy, completing my book manuscript based on 5 years of ethnographic research among older adults aging in place has immersed me in a bygone social world. Most places referenced  in my study have closed and most people referenced have died. Facing my book manuscript has had me waking up to ghosts every morning. Writing about the dead every day stirs memories of research participants but also personal reminiscences of family members that have since gone. Sometimes I reflect on the strangeness of spending so much time with people who are no longer here. But living among ghosts feels more than fitting when I consider my personal history with loss.

Studying aging and the life course came to me as an unexpected detour. I had few relatives that reached old age. “We die young and leave a nice corpse,” I joked of my family’s early mortality. Three of my grandparents died before I was born—all had problems with excessive alcohol use. My maternal grandfather died at age 49; my mother died from colon cancer shortly after turning 53.

But early loss and family caregiving experiences informed my understanding of central concerns for my research participants as they coped with gentrification, the accumulated losses of neighbors, friends, and family, health setbacks, depression, financial struggles, and other everyday challenges. I lost my mother when I was 16 and served as my father’s primary caregiver for years.  These caregiving responsibilities began in  my mid-20s when he received separate diagnoses of kidney and advanced lung cancer within a year.  Caring for my father during this time helped me to empathize with elders who mourned numerous loved ones and both provided and received care.

I also drew on my own patient experiences when connecting with study participants. My diagnosis at age 26 of an autoimmune disease, Sjögren’s Syndrome, necessitated accommodating debilitating symptoms such as crushing fatigue, inflammation, and complications from severe dry eyes and mouth. Like many of my research participants, I frequently used medical services as I first sought a diagnosis and later managed chronic pain and other confounding symptoms, making me feel prematurely old. Research participants checked in on my health as much as I gathered data about their illness experiences and interactions with doctors. We all closely monitored our energy and budgeted extra time for rest and recovery.

I never anticipated  how significant the toll would be of absorbing the losses, health crises, and other hardships elders experienced during my study. No matter how much distance I imagined I had from my study participants, their deaths inflicted varying amounts of psychic weight, depending on my involvement with them. Members of the core group with whom I spent the most time felt closer to me than some distant family members and casual friends.

Even the term “research participants” feels an awkward fit to describe these relationships. I much prefer to think of them as “research companions,” as sociologist Teresa Gowan calls the unhoused people with whom she conducted ethnographic fieldwork over several years in San Francisco. For me, this term better captures the complexity of relationships developed with people over a long period of embeddedness.

Many research companions exited my study through death. Others died afterwards. Some losses I discovered in passing. I visited others with whom I’d remained in contact in hospitals and nursing homes as they entered their last days. Expected losses filled me with deep sorrow. Deaths that I considered premature, such as the passing of Angelica, who worked at one of my field sites and died at age 55 after a breast cancer recurrence, still leave me shaken and in profound grief. Memories sneak up on me, and I find myself fondly remembering people’s quirks, annoyances, verbal expressions, big and small acts of kindness. I continue to access their wisdom and smile at the laughs we had. They live on in me now.

At 43, firmly planted in midlife, my own mortality doesn’t seem as far-off as when I first began studying older adults in my late 20s.  The pandemic’s upheaval deepened personal and scholarly reflections on loss as I worked on this material while caring for vulnerable family members, including my father when he was in his mid-70s and my 37-year-old sister, who had physical and psychological disabilities. My sister’s severe isolation and two hospitalizations led to her nursing home admission in 2020.

Six months after that admission, my father died from a lung cancer recurrence. These accumulated griefs played in the background as I worked slowly but steadily on my book, frustrated by my slow progress and by the severe depression that left me emotionally and physically exhausted. I cried every day. But each drop hollows the stone, I comforted myself. I felt grateful for elders’ wisdom of steady persistence amid myriad obstacles. My incremental forward movement resulted in a completed book manuscript, reminding me of the marathon-like nature of long-term research and of the importance of pacing myself during projects spanning years.

Studies highlight how scholars don’t often anticipate how research may affect their emotions. Research further suggests that topics such as violence, death, loss, terminal or chronic illnesses, and methodology choice can contribute to researcher distress. Several articles highlight the importance of self-care techniques, talking with others, and seeking professional help when needed.

While we have much to understand about the personal costs and benefits to researchers, as an important first step, we might encourage discussions with colleagues, mentors, and advisors about encountering difficult topics and sharing resources and lessons learned. Along with intentional planning around encountering difficult stories and considering how to provide support for research participants sharing their experiences, we might encourage researchers to prioritize their own well-being and consider self-care strategies, such as reflective writing, echoing the oft-quoted safety instructions to put on your own oxygen mask first before helping others.

Comments

[cuphead online]

Is it true that a study took place that older people in Europe get better care than Asians?

[Retro bowl]

Your work is really great. It was fun to read your article. This is a great piece of paper for me.

[buckshot roulette]

I appreciated the author's willingness to explore multiple sides of a controversial issue and present a balanced view.

[cookie clicker 2]

I appreciated the wisdom of the older generation in their ability to persist steadily despite facing numerous obstacles.