Research Partnership Rather than Research on the Amish

Personal Narrative

Gelassenheit. The first time I heard this word it sounded like a sneeze and I remember asking for the research participant, who I was interviewing, to translate. She paused, appeared thoughtful and said “for you it would be, it would be you being humble. That what you do is for God and you are grateful you can.” When I decided that I wanted to pursue doctoral education in nursing research almost ten years ago, I had no inkling how much this word, and my relationship with an Amish community would enrich my life. I knew that I wanted to do research with a population who was vulnerable. I knew that I wanted to learn how to listen to people’s stories and translate their perspective to the scientific community. I did not grasp how much I didn’t understand, and how reliant I would become on partnership to guide the research. My personal experience taught me that thinking you are humble and grateful, is not the same as being humble and grateful.

Research with groups who are considered minority, vulnerable, ethnically or racially diverse is a unique experience. There is a wealth of research about how the research community should interact with these groups, all mindful of a less than savory history of how these groups were marginalized during the research process. When I first approached a member of an Amish community I knew this history, and I thought I was sensitive to the power differential. I assumed that as long as I was polite, there was no reason that they wouldn’t want to work with me.

I read literature about working with cultural groups, and most said to begin with a female Elder. When I first approached a female Elder of the Amish community about doing a research study, I asked her whether she thought there would be people in her community who might want to talk to me about mental health and aging. She was very polite and encouraging at the time, but never returned subsequent messages and when asked directly was evasive about getting started. I reflected that this may not have been the best strategy. This was the first of many missteps in my research relationship with this community that I made from a paternalistic and naïve perspective that of course they would want to talk to me, of course they would want to understand the same things I wanted to understand.

My second attempt met with more success, because instead of just asking someone I knew who was Amish, I asked who I needed to talk to, and how I should talk to them. This male Elder of the community was also polite and encouraging but blunt in his opinion that, “no, no one will talk about that”. I was distressed. I hadn’t planned on him saying no. In the moment I was faced with a choice, walk away, and be thankful for his time or see if there was another way. I asked him what he thought people would want to talk about. Instead of giving me an answer, he told me a story. He told me about someone in the community who had taken their grandmother to the hospital because she was experiencing dizziness. He said that the hospital doctor ordered multiple medical tests and kept her in the hospital for several days. He shared that this was hard on her family who had to hire a driver to take them back and forth to the hospital, over 30 miles away. They were worried about the cost of the tests and the hospital stay, but wanted to help her. The grandmother had been sent home with a diagnosis of syncope and instructions to stay hydrated, make position changes slowly, and no reason for why she was dizzy. Her medical bills were several thousand dollars.

Over time I would learn why these details were important to the Elder and why he wanted me to understand why this is something people in his community would want to talk about. That day I asked him to consider...