By Karla T. Washington, Ph.D., LCSW
As a qualitative researcher, I often end interviews with family caregivers by asking some variation of the following question. “What haven’t I asked you about that is important for me to know if I want to understand your experience?”
Responses to this question run the gamut. Caregivers have shared recipes and stories. They’ve cried, and they’ve prayed, and they’ve talked about their greatest hopes and fears. Other times, they’ve said something along the lines of, “Nothing. I think we’ve covered it.”
“What haven’t I asked?”: An unexpected answer
Several years ago, I received an unexpected answer to the “What haven’t I asked?” question. I was interviewing a hospice patient’s daughter, whom I will call Carol. Carol had, as the expression goes, been “put through the wringer.” She had been all but abandoned by family members and friends, who left her to care for her mother alone. She had needed to quit a job she had enjoyed to become her mother’s full-time caregiver. Her financial savings had been depleted, and she was both physically and emotionally exhausted much of the time. To begin ending our interview, I asked my usual question. “What haven’t I asked that’s important for me to know to understand what it’s like to care for someone who is dying?” Carol’s response surprised me. She replied, “We haven’t talked about what’s good about it.”
Both/and, not either/or
For the next 10 minutes, Carol talked about her mom. She described a funny and resourceful woman who—even still—had a beautiful singing voice and an even better smile. It was obvious that Carol not only loved her mother, she liked her. Carol enjoyed helping her fiercely independent mom who, it seemed to Carol, had never needed help before. Carol was a gold mine of tips, and she wondered whether her professional future lie in helping other family caregivers. For Carol, caring for her dying mom had been terrible, but it had also been beautiful: both/and, not either/or.
Research on the positive aspects of caregiving
Research suggests that Carol was employing a promising approach to coping with caregiving stressors. While it goes by different names, paying attention to the good in the midst of the bad can be helpful. Lab for Caregiving Innovation researcher Dr. George Demiris is currently testing one such intervention for hospice family caregivers. In part, it encourages intentional communication about the positive aspects of caregiving. We look forward to seeing the findings from this National Institute of Nursing Research-funded study (2R01NR012213) in 2021 .
Broadening the research conversation
Outside of formal intervention studies, family caregiving research would benefit from increased attention to what’s good about caregiving. Researchers can ask questions like: What role can hospice and palliative care teams play in shifting communication about caregiving from problem-based to more strengths-based? What can we do in workplaces, communities, and society to help caregivers with the hard stuff, making space for the good?
About the Author
Karla T. Washington is a Licensed Clinical Social Worker and a founding member of the Lab for Caregiving Innovation.