Among the Amish: Interviewing Unique Populations on Sensitive Topics

By Berwood Yost, Christina Abbott, Jennifer Harding, and Angela Knittle

Researchers working within the United States will encounter few cultures as foreign to them as the Amish. Their purposeful self-exclusion from modern American life has given few of us the opportunity personally to encounter and understand their rich cultural traditions. Improper handling of such a culture could defeat efforts to collect some very important survey data.

In 2004, Franklin & Marshall College, together with Pennsylvania State University, received a grant from the Pennsylvania Department of Health to research the prevalence of risk factors for preterm birth and low-birth-weight babies among minority populations residing in Lancaster County, Pennsylvania. The first phase of the project included face-to-face interviews with Amish women between the ages of eighteen and forty-five. A group of religious conservatives attracted by a promise of religious freedom, the Amish first migrated to the New World in the 1700s. Lancaster now has the second highest number of Amish settlements in the United States, with more than 22,000 Amish residents.

Although there is substantial research on pregnancy risk factors for the general population, the Amish have not received much attention, primarily because of their self-imposed separation from the broader society. The Amish differ from the general population in numerous ways that could affect pregnancy outcomes, including an agrarian lifestyle, frequent contact with pesticides, a nutritious diet, limited access to and utilization of health care services, extraordinarily large families, and high incidence of genetic disorders and birth defects. Unfortunately, the very things that make the Amish an interesting population to study also make it more likely that they will not participate in research efforts.

Since almost none have telephones, face-to-face interviewing is the only feasible interviewing method for the Amish. Some households share an outdoor telephone with neighbors, but most do not have an interior phone unless they operate a home business. The Amish culture has rejected phones and many other modern conveniences to maintain their pronounced sense of community, humility, and separation from the materialistic, contemporary world. The belief of separation manifests itself in their plain dress, the preservation of Pennsylvania Dutch as their primary language, the maintenance of traditional familial relationships, and the minimal use of technology.

Not surprisingly, this lifestyle often creates tension between the Amish and the government. Traditional Amish beliefs dictate they largely refrain from government programs and services, choosing instead to rely on community generosity and mutual aid to help church members in need. Furthermore, due to conflicts between Amish culture and the mainstream government over issues such as compulsory education, many Amish distrust the government as well as members of mainstream society, whom they call the "English."

Clearly, a highly personal survey regarding women's health issues and sponsored by a government agency would require intense planning and collaboration to be successful within the Amish community. Given the cultural foundations of the Amish, careful consideration throughout the project's development was given not only to the ethical and moral protection of individual respondents' rights, but also to the rights of the broader community.

Past research recommends a variety of techniques to promote valid data collection on minority populations. The foremost recommendation is to involve community members in all phases of the interviewing process, from questionnaire design to interviewer techniques. The primary contributors to the research design from the Amish community for the pregnancy risk-factor study were Amish women who worked with a local Amish health research clinic as liaisons. These women were asked to participate because they had experience working with "English" researchers, were familiar with the beneficial aspects of survey research, and were comfortable approaching community members they might not know personally. The Amish liaisons served three main functions: preparing training materials and reviewing the survey instrument; mediating the relationship between the respondent, the interviewer, and the culture; and ensuring respondents' privacy during the interviewing.

Project developers held several informal meetings with an initial group of liaisons who reviewed the survey instrument, identifying questions that might be difficult for traditional Amish women to answer. The liaisons spotted several questions that contained medical jargon and other terminology unfamiliar to Amish women, and items that did not apply to the Amish community, such as questions about television, computer, and motor vehicle use. These questions were either reworded or removed completely from the survey instrument. Questions about alcohol, drug, and tobacco use were also removed, since these substances are banned in Amish culture and respondents would not likely admit to their use.

Interestingly, the liaisons recommended retaining some items that researchers believed would be too sensitive, such as questions about birth control practices. They noted that birth control is sometimes used by Amish women, despite being forbidden. Though contraception is not openly discussed within the community, the liaisons thought respondents would be more likely to admit to its use than to the use of banned substances.

Questions about spousal abuse and psychological states also raised concerns. The liaisons believed interviewers would encounter cases of spousal abuse or mental health problems and wanted to know how they would handle those situations, as well as what the ramifications might be with regard to legal measures taken against abusive husbands, or the institutionalization of respondents with mental health problems. This concern was addressed by providing interviewers with a list of health service organizations that Amish women could contact if they chose to.

Finally, contrary to standard practice, the liaisons did not recommend mailing a pre-notification letter. Word-of-mouth is a powerful means of communication in the Amish community, and there was no way of knowing how the community would respond to a written description of the survey. Instead, the liaisons recommended using personal visits to explain the research, answer questions, allay concern, and establish rapport.

Meetings between project developers and liaisons also provided the opportunity to inquire about proper interviewer conduct. Liaisons helped establish a protocol for interviewer dress, proper cross-cultural social behavior, appropriate manners of communicating, and other cultural sensitivity issues. These techniques served to maximize respect for the community and minimize barriers to the community and the individual.