Joy in qualitative family caregiving research

Karla T. Washington, Ph.D., LCSW

The joy in qualitative family caregiving research
The Washingtons at Snoqualmie Falls

The joy of qualitative research: Learning about lived experiences

I find pure joy in doing qualitative family caregiving research. When I was first learning about qualitative research, I read a terrific article about a topic I knew little about. The article describes research on how children experience removal from their parents prior to entering foster care. The study is a great example of how qualitative research reveals things we couldn’t learn from standardized instruments. Turns out, nearly all the kids who had been removed by police officers had been taken to McDonalds. Zero said it helped them feel less upset. That’s such a small thing, but it’s something that would be next to impossible to learn from a survey. That’s the joy of qualitative research—learning about the pieces of people’s lives that can’t be easily measured. 

Qualitative research with family caregivers at the Lab for Caregiving Innovation

At the Lab for Caregiving Innovation, we collect, analyze, or think about qualitative data nearly every day. Over the years, we’ve interviewed hundreds of family caregivers. We’ve listened to their stories, watched videos, seen pictures, and been invited into patients’ and caregivers’ lives. They have taught us what makes caregiving hard and what makes it sacred. We’ve learned to how to make caregiving better, and we try every day to do so. I can’t speak for my colleagues, but the qualitative research is my favorite part (many of our publications featuring qualitative studies are available via our website. Below are just a few examples of moments when qualitative family caregiver research which has left me feeling joyful, grateful, and renewed.

A daughter breaks bad news

I just reviewed interviews from a study of family caregivers of cancer patients. One daughter talked about her mother’s cancer surgery. Everyone had hoped the surgeon would be able to “get it all.” He couldn’t. And the surgery lasted well into the evening. When her mother woke up, there wasn’t a doctor in sight. The caregiver was left alone to tell her mother. I’m part of a team of educators who help health care professionals learn to break bad news. I’m here to tell you it’s really hard. I had never before thought about how hard it must be for the family members who do it alone. It may seem weird to view that as an example of the joy of qualitative research. Nonetheless, I feel honored to have been entrusted with this family’s story. I hope my sharing it will help make things better for caregivers in the future. 

Cross-country caregiving

I recall another woman who participated in a study about solving caregiving problems. When she enrolled in the study, she and her boyfriend had been homeless for a while. They had traveled over 1,000 miles to be nearer to family since her boyfriend’s cancer had progressed. They got help from emergency rooms along the way when they could. But, of course, emergency rooms aren’t cancer treatment centers. And symptom management is sometimes accomplished via powerful medications. They found it almost impossible to find someone willing to prescribe heavy duty meds to someone just “passing through.” They usually had no money for meds anyway. But they made it 1,000 miles in the midst of a situation that can bring extraordinarily wealthy families to their knees. Now I get to share their story. Maybe another caregiver will read about it and be able to face a challenge that previously felt insurmountable. 

You gotta go!

I feel uniquely blessed to do qualitative research with families facing life-limiting illnesses. Several years ago, I got the opportunity to do research in the state of Washington for a few months. But I had to leave my family behind. I was blown away by how beautiful it was there. But I was mostly alone in a new place, and I was scared to venture out. One day, I interviewed a man who was caring for his dying wife. He talked a lot about his marriage and all the places he and his wife had traveled. Coping was hard with their new life, which involved more trips to the doctor than hikes. He knew I was new in town, and every time he described a trip, he told me, “You gotta go!” 

I didn’t immediately set out on the open road. But a few weeks later, my husband visited and we went to see a famous waterfall. At the foot of a trail, there was a wooden barrier that visitors were instructed not to cross. Except dozens of people had. They were laughing and splashing water from the waterfall on each other. Some were having picnics! But I’m a big chicken and major rule-follower. I was mortified when my husband suggested we join them. Then I remembered that man and the way he talked about his wife and their travels, and I climbed over. We didn’t have a picnic, but it was stunning down there. It’s not always the case that people facing death bestow bits of wisdom on the rest of us. That’s the “brochure version” of dying. But sometimes they do, and it’s a joy to learn from them.

Joy of discovery

All of the examples above focus on the positive aspects of collecting qualitative data. But qualitative analysis, although often painstaking, can also be exciting. When analyzing qualitative data, I often feel like a detective wondering, what’s really going on here?I’m also reminded of Polaroid pictures that slowly come into focus right before your eyes. A recent example is provided in my study of ALS patients and family caregivers. The motivation for the study was to learn how we should incorporate palliative care services into an existing ALS clinic. Study participants had some ideas that were clinic-based, but they mostly talked about needing help after they left the clinic. Our planned intervention wasn’t going to provide help where it was really needed! This realization allowed us to shift gears. Now our study will help health care professionals provide more person-centered care.

There’s plenty of work for everyone

Family caregiving is rife with challenges. There is plenty of work for everyone who wants to help make it better. And moving the field forward will require both qualitative and quantitative research—not to mention mixed methods. Furthermore, researchers should employ whatever method best fits their research question. That’s Research 101. And it’s all hard. But if qualitative research is in your future, anticipate moments of joy along with all the hard work.

About the Author

Dr. Karla Washington is a founding faculty member of the Lab for Caregiving Innovation. She is our expert in qualitative research methods.

Family and Community Medicine Research Group

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