Friday, June 7, 2019 • 8:30–10:00 am
A Study on Developing Culturally- and Linguistically-Appropriate Cancer Education to Amish and Mennonite Communities in Ohio
Melissa Thomas, PhD, C-CHW
Doretta Thomas, C-CHW
Ohio houses two of the world’s largest Amish settlements and dozens of Amish and Mennonite communities found in the rural and Appalachian sections of the state where access to cancer education is severely limited by transportation, translation, and technology. Studies conducted by the community-led Project Hoffnung (Hope) team focus on developing effective breast cancer education interventions aimed at reducing barriers and increasing compliance to recommended breast cancer screening guidelines.
From October 2017 to March 2019, 483 women received a one-on-one tailored breast cancer education program by one of three trained community educators at women’s health screening events. Participating women completed a pretest survey of key breast cancer knowledge questions. During the education session, health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine, Revised (REALM-R) method.
The mean age was 55.06 years, and 41 percent were new participants. Health literacy scores were much higher than expected, with the mean score of 6.94 out of 8 correct. Only one-fourth read below a sixth-grade level. The pre-test mean total knowledge score was 5.06 out of 7. Those who had previously attended a screening had significantly higher pre-test knowledge scores (p<.05). The most commonly missed question was on lifetime risk of getting breast cancer (low, medium, high): 62.3% underestimated risk. The second most missed question was related to age as a risk factor: 40.7% did not know that women older than 50 are at higher risk. Understanding knowledge of breast cancer is crucial in developing culturally competent education programs.
is assistant professor, family medicine, at Ohio University Heritage College of Osteopathic Medicine and founding director of the nonprofit Center for Appalachia Research in Cancer Education (CARE). Thomas has served as principal investigator on a number of research and program studies among Amish and Mennonite communities. Her research interests center on addressing health needs of communities by designing, implementing and evaluating community-led health education and promotion initiatives, especially in cancer health disparities.
Doretta Thomas has served as lead breast educator for over 20 years with Project Hoffnung (HOPE): the Amish and Mennonite Breast Health Project. A certified community health worker and a lifelong resident of the Appalachia region of Ohio, she has presented at numerous conferences to showcase the importance of community-led health initiatives.
Building Healthcare Bridges: Secrets for Successfully Integrating Evidence-Based Practice for Conservative Anabaptist Patients
Phyllis Myers, MLIS
One in four Old Order Amish, Mennonite, German Baptist, and related denominations I surveyed believe we should not trust information from colleges or universities. So how can modern health care practitioners best incorporate evidence-based procedures in conversations with conservative Anabaptist patients? My research, conducted through an Internal Review Board at St. Joseph College and St. Elizabeth School of Nursing, asked respondents to list which sources they believe are the most reliable and which are most likely to mislead patients. These findings were used to prepare information sheets about bed bug treatments, including non-electric remedies, for conservative Anabaptist communities. Procedures were then shared with Amish, Mennonite, and German Baptist members with positive results.
This presentation will also include information on what Plain patients want to know about treatment strategies, therapeutic research, and alternative techniques, and will conclude with ideas for building bridges between modern practitioners and conservative Anabaptist communities.
Phyllis Myers has spent 21 years in a conservative horse-and-buggy/non-electric Old Brethren German Baptist (OBGB) community, and has also served as the director of a public library and a museum coordinator. Myers holds a master’s degree in library and information science from Indiana University.
Plain Talk about Health: Linguistic Aspects of Mediation between Amish and Mennonites and Health Care Professionals
Mark L. Louden, PhD
As the population of Amish and Old Order Mennonites grows exponentially, so are the contacts between Plain people and medical professionals increasing. All Plain adults are bilingual; however the fact that the primary everyday language for most is Pennsylvania Dutch is relevant for understanding how they navigate the health care system. In this talk I will give an overview of language-related questions involved in communication between Plain people and health care providers with a focus on three areas: translation, interpretation, and patterns of language use.
With regard to translation, there has been a marked increase in the demand for documents from hospitals, insurers, and government agencies to be rendered from English into Pennsylvania Dutch. I will discuss the need for such translations and some of the challenges involved with producing them.
Pennsylvania Dutch–English interpretation, which involves oral communication in real time, is routine for preschool-age Plain children and is normally conducted by parents; however, under special circumstances, such as forensic interviews, parents and other family members may not be present. I will address situations in which interpretation for children and also adults by nonfamily members is either necessary or desirable.
Finally, I will discuss distinctive aspects of how Plain people express themselves in both Pennsylvania Dutch and English when speaking about health and related topics. I will focus on how sensitive topics such as pregnancy and childbirth are discussed, as well as ways in which Plain people generally express themselves, including their avoidance of overstatement and caution when speaking of events located (potentially) in future time.
Mark L. Louden is a fluent speaker of Pennsylvania Dutch and has written extensively on the language and its speakers. He is the author of Pennsylvania Dutch: The Story of an American Language. Louden is the Alfred L. Shoemaker, J. William Frey, and Don Yoder Professor of Germanic Linguistics at the University of Wisconsin–Madison, directs the Max Kade Institute for German-American Studies, and is an affiliate faculty member in the UW Religious Studies Program.
High Clinical Impact KCNQ1 Mutation Present in 1/40 Amish: Culturally-Appropriate Return of Results From Population Whole Exome Sequencing (WES)
Elizabeth A. Streeten,* Vincent Y. See, Toni Pollin, Melanie Daue, Sudhir Vashist, Braxton D. Mitchell, Alan R. Shuldiner
Mutations in KCNQ1 cause Long QT Syndrome, Type 1 (LQTS1), with an estimated frequency of 1/2000. From research WES of 4950 Old Order Amish, we identified an exonic missense variant in KCNQ1 (c.671C>T, p.T224M), initially classified as a VUS. One in 40 Amish carry this variant, with carriers demonstrating longer EKG-derived QTc intervals compared to non-carriers (b=20 msec; p=10-23). Since beta blocker (BB) therapy reduces the risk of syncope and sudden cardiac death (SCD) in LQTS1 by 70-90%, we performed follow-up clinical phenotyping of the variant to inform treatment recommendations and enable genetic counseling.
Following IRB approval, 124 Amish were notified that they carry a genetic change that put them at risk for heart problems. Eighty-nine individuals accepted an invitation to enroll in a study that would clarify their risk. At a first home visit, we obtained a comprehensive medical history including personal history of syncope, 3-generation family history (FH), repeat EKG, and blood for CLIA confirmation. After variant confirmation, we returned for a second home visit to provide treatment recommendations (Heart Rhythm Society guidelines) and genetic counseling. Twenty-six non-variant carrier Amish individuals were enrolled as controls.
All p.T224M variants were CLIA-confirmed. Mean QTc was 480+32 ms in cases, 432+21 ms in controls, p<0.001 (normal ranges: M<450 ms, F<460 ms). Syncope was noted in 26 (29%) cases vs 4 (17%) controls (p=0.14), with non-vasovagal syncope in 23 (88%) cases vs zero controls (p<0.001). A FH of SCD in 1st or 2nd degree relatives <30 yo was noted in 8 (10%) cases, including 4 crib deaths, a 6 yo walking and a 12 yo swimming, vs zero controls (p=0.008). Based on these results and functional predictions, we reclassified the variant as likely pathogenic, per ACMG/AMP guidelines. Of 67 visit #2 completed to date, 62 (94%) cases met guidelines for BB therapy. Of these, 34 (54%) agreed to start BB, which was coordinated with local primary care providers. Cascade testing was recommended for all 1st degree relatives.
A KCNQ1 VUS was present in 1/40 Amish and associated with a high risk of syncope and FH of early sudden death. Additional phenotyping enabled reclassification to likely pathogenic. Increased awareness, cascade and population screening, and treatment of affected individuals will likely prevent significant arrhythmogenic morbidity and mortality.
Elizabeth A. Streeten, MD, is an associate professor in the University of Maryland School of Medicine and the co-director of the Genetics and Personalized Medicine Clinic at the University of Maryland. She is board certified in Internal Medicine, Endocrinology and Metabolism, and Clinical Genetics.
Self-Reported Sleep Duration and Pattern in Old Order Amish and Non-Amish Adults*
Man Zhang, Kathleen A. Ryan, Emerson Wickwire, Teodor T. Postolache, Huichun Xu, Melanie Daue, Soren Snitker, Toni I. Pollin, Alan R. Shuldiner, Braxton D. Mitchell
* Elizabeth A. Streeten will present this paper
Sleep duration has been decreasing for many years in the US, a change that has been attributed in part to technology and the modern American lifestyle, which impinge upon sleep time. We compared sleep duration between the overall US population and the Old Order Amish, a culturally isolated population that is much less affected by changes in the mainstream culture. Thus, we hypothesized that sleep duration in the Amish would be longer than in non-Amish. Sleep duration was obtained by questionnaire administered to Amish (n = 3,418) and from the 2015-2016 National Health Interview Survey (NHANES; n = 1912). Self-reported sleep duration was calculated as the difference in usual times that the participants reported they went to bed at night and woke up in the morning. In both Amish (mean age: 43.7 ± 16.7 yrs) and NHANES (mean age: 50.0 ± 20.6 yrs), women had a slightly longer sleep duration than men (p < 0.0001 in both Amish and NHANES) and sleep was significantly longer in subjects aged 18-29 yrs and ≥ 70, compared to those aged 30-69 yrs. Seasonal-adjusted sleep duration was slightly shorter in Amish than that in NHANES (7.8 minutes shorter in Amish, age- and sex-adjusted p < 0.0001). However, Amish were significantly less likely to report sleeping fewer than 7 hrs per night (15.4% in Amish vs. 20.5% in NHANES, p < 0.0001). In terms of sleep scheduling, on average Amish went to bed 80.4 minutes earlier than NHANES and arose 87.6 minutes earlier (age-, sex-, and season-adjusted p < 0.0001 for both). In the Amish, sleep duration was longer in clerks than in farmers (p < 0.0001) and was significantly correlated among household members (0.15 < r < 0.62, p < 0.001), although there was no evidence that this trait was heritable (h2 ~ 0) after adjustment for household. In summary, Amish are significantly less likely to be “short sleepers” than non-Amish despite unanticipated similar mean sleep duration.
Man [Grace] Zhang, PhD, has been working with Dr. Braxton Mitchell as a postdoctoral fellow for one and half years at the University of Maryland School of Medicine. She received her PhD from the University of California, Davis. Her research interest is the impact of life style, including nutrition and sleep, on chronic diseases. She has been working on Amish sleep patterns, metabolites GWAS, and the contribution of the polygenic risk score to LDL level variation.
A Missense Variant in B4GALT1 Reduces Low-Density Lipoprotein and Fibrinogen
May E. Montasser,* Alicia Howard, Rebecca McFarland, Cristopher Van Hout, Giusy Della Gatta, Biao Shen, Ning Li, Gannie Tzoneva, Nehal Gosalia, Aris Economides, Braxton Mitchell, Matthew Healy, Jeffrey R. O'Connell, Elizabeth Streeten, Norann Zaghloul, Carole Sztalryd-Woodle, Simeon Taylor, Alan R. Shuldiner
Elevated low-density lipoprotein cholesterol (LDL) and fibrinogen are major independent risk factors for cardiovascular disease (CVD). Understanding their genetic basis may identify novel therapeutic targets to lower their levels and treat or prevent CVD.
Isolated founder populations can enable discovery of novel disease-associated variants enriched in these populations through genetic drift. Although very rare in general populations, these novel variants can inform biology relevant to all humans.
We identified a strong novel association (p = 3.3 E-18) between a missense SNP (N352S) in B4GALT1 and LDL in the Amish population. Each 352S allele is associated with a 14.7 mg/dl lower LDL, and has a frequency of 6% in the Amish while extremely rare in the general population. In addition, this SNP was associated with a 20% lower fibrinogen level (p= 5.0E-4).
B4GALT1 encodes a glycosyltransferase responsible for adding galactose to maturing glycan chains of glycoproteins. Knockdown of the B4GALT1 orthologue in zebrafish resulted in significantly lower LDL compared to control (p=0.02). Co-expression of wild type human B4GALT1 mRNA rescued the LDL phenotype, while co-expression of mutated human B4GALT1 mRNA resulted in a 15% lower rescue of the LDL phenotype, suggesting only a partial defect in function introduced by the missense variant.
To assess the impact of B4GALT1 N352S on glycosylation, the carbohydrate deficient transferrin test was performed using serum samples from 24 subjects from the 3 genotype groups. Wild type homozygotes had normal glycosylation, while 352S homozygotes had abnormally high levels of carbohydrate deficient transferrin; heterozygotes were intermediate (p=7.6 E-10). These in vivo data strongly support the hypothesis that the N352S variant decreases the total enzymatic activity of B4GALT1 under physiological conditions.
We identified a novel gene and variant that is associated with lower LDL and fibrinogen, which may be cardioprotective. Evidence from cell- and animal-based experiments as well as human data indicate that the variant causes decreased protein glycosylation. Further understanding of the underlying mechanisms may provide new insights and therapeutic strategies for CVD.
May E. Montasser, MS, PhD, is an assistant professor in the department of medicine at University of Maryland School of Medicine in Baltimore, MD. Montasser's research focuses on applying genetic epidemiology and statistical genetics to identify the genetic components of cardiovascular disease risk factors such as lipids, blood pressure and diabetes in the Old Order Amish population. She is also an active contributor in several large consortia including the NHLBI-funded Trans-Omics for Precision Medicine (TOPMed) program.
“Mobile Internet Is Worse than the Internet; It Can Destroy Our Community”: Old Order Amish and Ultra-Orthodox Women’s Responses to Cell Phone and Smartphone Use
Rivka Neriya-Ben Shahar, PhD
This research explores exposure patterns and perceptions of cell phone and smartphone use among Amish and ultra-Orthodox Jewish women, while examining symbolic meanings these non-users might attribute to these devices. Triangulation of participant observations, interviews, and a survey serve to demonstrate that although these populations differ in their cell phone use (the Amish mostly don’t use them and the ultra-Orthodox only use those deemed to be “kosher”), they concur in their non-use of smartphones, deriving from their perception (shared among many religious communities), that smartphone content is impure. Implicit in statements made by these women is the notion that the medium itself is more dangerous than the message. The Apparatgeist (the relationship between the utility and meaning aspects of a device) enables us to see multiple levels of “context collapse,” in which boundaries between public, private, and liminal spaces between the device and its user, are blurred.
Women from both communities specifically emphasized social and emotional balance as being an important component of their personal and communal health and well-being. They explained in detail, the importance to their mental and physical health of both giving and receiving attention and support from their community. In observing users from the outside, they said that although people think that they get attention from others through the smartphone, this is not real attention. They argue that the smartphone disconnects people from their communities, friends, and family, and that it interferes with a person’s relationship with him- or herself, and even more importantly—with God.
Rivka Neriya-Ben Shahar is a senior lecturer at Sapir Academic College in Sderot, Israel, teaching courses in research methods, communication, religion, and gender. She received her doctorate from the Hebrew University of Jerusalem and was a Fulbright post-doctoral fellow and a scholar in residence at Brandeis University. Neriya-Ben Shahar’s most recent research project addresses the tension between religious values and new technologies among Old Order Amish women and Jewish ultra-Orthodox women.
The Dawdihaus: A Noun and a Verb, the Life and Voices of Loved Ones that Extend Generations. A Study in Rural Health and Rural Gerontology among the Amish and Other Plain People
Claire Marie Mensack, PhD, CHES
We are all living longer but also living longer with more diseases and disabilities. Thus, many older folks live in long-term care facilities that are adequate for their physical needs yet sometimes place them out of sight and away from family members. The loss of this familial psychosocial support can have negative effects on the well-being of these individuals.
In collectivist cultures such as the Amish and other Plain communities, the good of the community is the focus and the family is a microcosm of that collectivist culture at large. In these families, the older aging family member(s) often remain at home or near the main family dwelling in what is known as the Dawdihaus, a separate yet attached dwelling that aging family members chose to live in as their adult children assume the greater role of the head of the household.
The desire to move into the Dawdihaus and the adult children assuming greater household roles is not a forced concept but one that is proliferated by a yielding, a submission and grace. Among the Amish and other Plain communities, this sense of yielding is referred to as Gellasenheit.
This presentation is a phenomenological emic view of the Dawdihaus from the perspective of the older family members and their adult children who reside together. The data was gathered through a series of ethnographic “go along” interviews among Amish and Mennonite families from Belleville, Pennsylvania; Dover, Delaware; Chatham, Virginia; Union Grove, North Carolina; and Healing Springs, South Carolina.
Claire Marie Mensack is a community health educator with the South Carolina Department of Health and Environmental Control and an adjunct assistant professor at Newberry College in Newberry, South Carolina.
Anomie, Egoism, and the Amish: A Durkheimian Examination
Robert A. Strikwerda, PhD
Well-being can be measured by many indicators, and defined in a variety of ways. But what are the sociological contributions to well-being? I propose that a fruitful approach can be derived from a perhaps unexpected source: Emile Durkheim’s Suicide (1897). Durkheim takes much of his data from rates of suicide in the Europe of his time with little attention to peasant or folk societies, likely analogs to the Amish, nor to gender. He develops in the book, often considered a classic study of deviance, an explanatory theory in terms of two primary forms of suicide rates: anomic and egoistic. Durkheim argues these factors account for the variation in the degree to which the traditional Christian injunction against suicide is overridden (for example, higher rates of suicide among Protestants than Catholics).
I extrapolate from Durkheim’s account of these two forms to shed light on Amish well-being, moving from anomic to properly nomic and from egoistic into communitarian. I argue that on Durkheim’s account, one should not expect a high rate of suicide. Kraybill et. al (1980) in fact found that suicide rates for the Amish of Lancaster County were roughly half that of the general population. A high rate of egoistic suicide occurs in a society where there is excessive individualism and low social integration; the Amish are generally recognized to have a very communal focus with a high degree of social integration. Anomie is a condition of social instability resulting from a breakdown of standards and values, and thus can also lead to a high rate of suicide, whereas the Ordnung of an Amish congregation supplies a well-defined and enforced set of life norms. Thus, I suggest these two extrapolated social forms—properly nomic and communitarian—can afford a partial basis for Amish well-being.
Two other items require discussion: Durkheim mentions in a footnote that there can be fatalistic suicide where a society has excessive regulation. How does this relate to the Amish case? He also does not address issues of gender adequately anywhere in his work. Can my extrapolation of social well-being handle gender differences issues?
Robert A. Strikwerda is an associate professor of women’s and gender studies and director of the Global and Local Social Justice Program at Saint Louis University in St. Louis, Missouri.
Karla Campanella, MD
Sarah Elaine Martin
Clair D. Stauffer, MSW
This workshop, led by staff from WellSpan Philhaven Mental and Behavioral Health and members of Plain Anabaptist churches, will present best practices when engaging mental health care in Amish and other Plain communities. The leaders will address the concept and understanding of mental health in these communities, strategies for providing a continuum of care, ideas for engaging family and community members during and after treatment, and tips on working with lay-led Plain community counseling centers that sometimes supplement treatment patients receive in professional care facilities. Audience members will be invited to share their questions and experiences.
Karla Campanella is a psychiatrist at WellSpan Philhaven.
Sarah Elaine Martin is a mentor at Green Pasture.
Clair D. Stauffer is the coordinator of services to the Plain communities with WellSpan Philhaven Hospital, in the Plain Community Outpatient Clinic. He has been there for 4.5 years. Stauffer comes from a Plain Community Mennonite home of origin and has worked in the mental health field for nearly 15 years. He has conducted trainings on childhood developmental issues, and has 20+ years of experience with foster care as a foster care and adoptive parent.
Allen Hoover is the administrator at the Parochial Medical Center in New Holland, Pa.