The author Stacy Torres and Brittney Pond
Brittney Pond is a PhD student at the University of California, San Francisco and the Assistant Director of the Emancipatory Sciences Laboratory.
As quality researchers studying older adults and their caregivers, both paid and unpaid, our own struggles with loss, grief, and illness come to us throughout the research process, from study conception to writing up the results. Few road maps exist for navigating this form of scholarly emotional work.
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 often stem from growing up in a medically underserved area. In my dissertation, I conduct semi-structured interviews with US home care workers about their work experiences throughout the COVID-19 pandemic.
Throughout the research process, including data collection, listening to audio recordings, and reading transcriptions, I encountered complex stories of loss, illness, and death. Their accounts drew on unexpected personal memories of loss and illness. Some staff discussed their clients or family members with dementia, stirring memories of my grandfather’s 2019. death from Alzheimer’s disease. Listening to their experiences also brought back new memories of my father’s kidney cancer diagnosis less than 6 months ago. Their stories helped me reflect on the support I provided as I transitioned through the medical system as a family member, as well as studying medical institutions and systems.
By capturing participants’ experiences of death and illness about mothers, fathers, siblings, grandparents, and clients, I learned the importance of being “there” for yourself in these moments and beyond. To me, being present means giving yourself space, allowing time to reflect and acknowledge deep or difficult feelings and memories. Writing is a place to honor and amplify participants’ voices, stories, and lived experiences, and to process their feelings and thoughts as a researcher and as a person. This journey goes beyond analytical writing, but also through writing memos, personal journaling, and writing exercises.
As I, Stacy, completed my book manuscript based on 5 years of ethnographic research among older adults aging in place, I immersed myself in a bygone social world. Many of the places I mentioned in my research were closed, and most of the people I mentioned died. Considering my book manuscript, I wake up every morning with ghosts. In writing about the dead every day, I am moved by the memories of the research participants, but also by personal memories of family members who have since passed away. Sometimes I wonder about the strangeness of spending so much time with people who are no longer here. But living among ghosts makes me feel more than adequate when I consider my own personal history with loss.
Aging and life course studies turned out to be an unexpected detour for me. I had few elderly relatives. “We die young and leave a beautiful corpse,” I joked about my family’s early death. Three of my grandparents died before I was born, all with problems with excessive alcohol consumption. My maternal grandfather died at age 49; my mother died of colon cancer shortly after turning 53.
However, early loss and family caregiving experiences informed the central concerns of my research participants as they coped with gentrification, cumulative losses of neighbors, friends, and family, health problems, depression, financial struggles, and other daily challenges. I lost my mother when I was 16 and was my father’s carer for many years. These caregiving responsibilities began in my mid-20s when he was diagnosed with separate kidney and advanced lung cancer within a year. Caring for my father during this time helped me empathize with elders who were grieving so many loved ones and both providing and receiving care.
I also drew on the experiences of my patients when communicating with the research participants. When I was diagnosed with an autoimmune disease, Sjögren’s syndrome, at the age of 26, I had to deal with debilitating symptoms such as debilitating fatigue, inflammation, and complications from severe dry eyes and mouth. Like many of my research participants, I often used medical services because I first sought a diagnosis and then managed chronic pain and other distressing symptoms that left me feeling prematurely old. Research participants monitored my health as much as I collected data about their illness experiences and interactions with doctors. We all kept a close eye on our energy and took extra time to rest and recover.
I never expected the toll it would take to cover the losses, health crises and other hardships experienced by my elders during my studies. No matter how distant I imagined myself to be from my research participants, their deaths carried varying psychic weight depending on my involvement with them. The core group members I spent the most time with felt closer to me than some distant family members and casual friends.
Even the term “research participants” seems awkward to describe this relationship. I much prefer to think of them as “research companions,” as sociologist Teresa Gowan calls the uninhabited people with whom she conducted ethnographic fieldwork in San Francisco for several years. To me, the term better captures the complexity of human relationships built over a long period of settling down.
Many research associates have left my studies by death. Others later died. I discovered some losses in the past. I visited others I had kept in touch with in hospitals and nursing homes as they entered their final days. The expected losses filled me with deep sadness. Deaths that I considered untimely, such as Angelica, who worked at one of my field sites and died at the age of 55 after a recurrence of breast cancer, still shock and grieve me deeply. Memories flood me, and I fondly recall people’s quirks, annoyances, verbal expressions, acts of kindness big and small. I continue to draw on their wisdom and smile from our laughter. Now they live in me.
At 43, firmly entrenched in middle age, my mortality doesn’t seem as distant as it did when I first began studying older adults in my 20s.. The shock of the pandemic deepened my personal and scholarly reflections on loss as I worked on this material, caring for vulnerable family members, including my own father in his 70s and my 37-year-old sister, who had physical and psychological disabilities. Due to my sister’s severe isolation and two hospitalizations, in 2020 she entered a nursing home.
Six months after admission, my father died of a recurrence of lung cancer. These accumulated griefs played in the background as I slowly but steadily worked on the book, frustrated by slow progress and severe depression that drained me emotionally and physically. I cried every day. But every drop hollows out the stone, I consoled myself. I felt grateful for the wisdom of the elders, their constant perseverance in the face of many obstacles. My incremental forward movement resulted in a completed book manuscript, reminding me of the marathon nature of long-term research and the importance of pacing projects over years.
The research highlights that researchers often do not anticipate how research may affect their emotions. Research also suggests that topics such as violence, death, bereavement, terminal or chronic illness, and the choice of methods can contribute to the researcher’s distress. Several articles emphasize the importance of self-care techniques, talking to others, and seeking professional help when needed.
Although we have much to understand about the personal costs and benefits for researchers, as an important first step we could encourage discussions with colleagues, mentors, and advisors about challenging topics and the sharing of resources and lessons learned. Along with thoughtful planning for how to confront difficult stories and consider how to support research participants sharing their experiences, we can encourage researchers to prioritize their own well-being and consider self-esteem strategies such as instructions to put on your own oxygen mask before helping others.
