Saturday, June 8, 2019 • 8:30–10:00 am
Models of Culturally Appropriate Mental Health Care in the Context of Amish Culture: Learning from Existing Organizations in Indiana, Ohio, and Pennsylvania
Emily A. Troyer, MD*
Julian A. Davies, PhD, MDiv
Mary Kay Smith, MD
There is a paucity of research on how to deliver general medical or mental health care to Amish individuals most appropriately. The goal of this study was to describe the structure and practices of three existing organizations that provide mental health care services to Amish individuals. Semi-structured interviews were administered to providers at Oaklawn in Indiana, Philhaven in Pennsylvania, and SpringHaven Counseling Center in Ohio. Sixteen mental health providers were interviewed, and qualitative data analysis of interview transcripts was completed.
A model of culturally appropriate mental health care services for Amish individuals is outlined, with common characteristics including 1) an emphasis on cultural competency at the organizational versus individual provider level, 2) recognizing the influence of the collectivist nature of Amish culture on health care-related behaviors, and 3) recognizing that Amish individuals may define mental health, illness, and recovery differently than the non-Amish. This model can assist providers in furthering their ability to work effectively with Amish individuals in mental health care settings; however, further research is needed to expand our understanding of what it means to deliver culturally competent mental health care to this unique cultural and religious group.
Emily A. Troyer is completing a child and adolescent psychiatry fellowship at the University of California at San Diego/Rady Children’s Hospital.
Emerging Developments in Mental Health Treatment within the Plain Community
Charles Jantzi, PsyD
Over the past 15 to 20 years, Plain community members have opened and are operating a number of homes for the treatment of their members’ mental health issues. This presentation will begin with a brief history of the development of these homes, including the influence of and connection to the three hybrid treatment centers: Green Pasture, Rest Haven, and Woodside Rest. These centers are homes operated by the Plain community within the grounds or near to professional mental health facilities that provide therapy and psychiatric care for the residents. The current number of non-hybrid homes and the populations (men, women, adolescents, and couples) they serve will be discussed. Based on interviews with administrators, mentors, house parents, and activity coordinators, the approaches of these homes will be presented. This exploration will also include a review of similarities across the homes and populations as well as a more in-depth look at two or three homes. This is a significant change in the acceptance and delivery of mental health treatment among the Plain community and one that is likely to have a long-term impact on the mental health and well-being of members of the Plain community who struggle with mental health issues. The efficacy of this treatment will need to be explored in future research.
Charles Jantzi is a professor of psychology at Messiah College, Grantham, Pa. He has served as senior psychologist, Green Pasture Outpatient Clinic, Philhaven Behavior Health Care Services, in Mount Gretna, Pa.
Genetic Studies of Psychiatric Disturbances in the Old Order Amish
Maja Bućan, PhD
Several years after publishing “Genetic Studies of the Amish” with Victor McKusick and John Hostetler in 1964, Dr. Janice Egeland established an independent line of research. Interested in suicide and mental illness in the Old Order Amish, Egeland collected clinical records and blood samples from hundreds of family members (de-identified study subjects), and with their permission, made this valuable resource available to the scientific community. Generations of geneticists were able to collaborate and continue her studies. I reviewed Dr. Egeland’s early studies and will present our recent genetic findings on a large multigenerational Old Order Amish family with mental illness.
We analyzed genetic data from 150 family members with mental illness and their relatives (400 total) and compared our findings to those obtained on thousands of non-Amish. Our analysis revealed that psychiatric disturbances in the Amish, like psychiatric disturbances in non-Amish, are caused by multiple genes. This is in contrast to many Amish diseases initially studied by Dr. McKusick and later by the Clinic for Special Children, where it was possible to link a single gene mutation to a disease. Although Dr. Egeland’s study focused on bipolar disorder, we show that the same set of genes that causes bipolar disorder in one family predisposes to other psychiatric disturbances, such as anxiety, postpartum depression, or psychotic behavior, in other families.In addition, by combining sequence data for the Old Order Amish with data from other populations, we generated a risk score that can be used to evaluate the overall load of genetic mutations that predisposes to mental illness in the Amish.
Maja Bućan is a professor of genetics at the University of Pennsylvania’s Perelman School of Medicine. The main goal of her laboratory is to understand the genetic basis of complex disorders; they recently participated in several large-scale genomic studies of autism spectrum and bipolar disorders. The focus of Bućan’s research relevant to this conference is the study of mental illness in the Old Order Amish, using a collection of samples in the Amish Study of Major Affective Disorders (ASMAD) established by Dr. Egeland. This is the first step in investigating the relationship between mental illness and Mendelian diseases.
Birthing Services and Newborn Care Model for Plain Communities: Experiences from the La Farge Medical Clinic
James DeLine, MD
Most Plain families in Wisconsin choose unattended or Amish traditional birth attendant childbirth options in the home setting. In 1993, in response to my experiences with multiple obstetric complications with home births, I established an out-of-hospital birthing center at the La Farge Medical Clinic, which is located in rural southwest Wisconsin in close proximity to several Amish settlements. At its inception, our birthing center adopted a midwifery model of care for low-risk, out-of-hospital births. The center has come to offer assistance with the most complex birthing challenges, such as twins, malpresentations, vaginal birth after Caesarean section, prior postpartum hemorrhage, prolonged rupture of membranes, and unsuccessful home birth efforts. This unique collaboration between midwifery care and obstetrical support services has led to good birth outcomes at a fraction of the normal cost in these high-risk birthing scenarios, with a 4% C-section rate.
In 2015, our clinical services expanded beyond the maternal-newborn period. To meet the health care needs of newborns identified with genetic disorders through our birthing center and beyond, the Center for Special Children was established at the La Farge Medical Clinic.
In this presentation, I will describe how our birthing center has allowed patients to experience the benefits of the midwifery model of care supported by modern medical obstetrical support, and discuss the outcomes for both low and high-risk birthing services. I will also outline the mission and services offered at our unique “center within a clinic” dedicated to caring for families with rare genetic conditions.
James DeLine is the medical director at the La Farge Medical Clinic, Vernon Memorial Healthcare, in southwest Wisconsin. He is a graduate of the University of Illinois School of Medicine.
Newborn Screening for Wisconsin Plain Communities: Challenges, Barriers, and Strategies to Improve Access and Acceptance
Jessica Scott Schwoerer, MD*
Christine Seroogy, MD
Newborn screening (NBS) is a lifesaving test offered to all newborns in the United States since 1965. Our clinical experiences at the American Family Children’s Hospital in Madison, Wisconsin, raised concerns about decreased access and utilization of newborn screening among Wisconsin Plain newborns. In 2012, we endeavored to improve health care access for Wisconsin Plain families through partnership with rural community physicians and midwives. In this talk, we will discuss survey results from Wisconsin Plain families on newborn screening and our approaches to streamline rapid diagnosis of genetic disorders in a culturally appropriate manner.
As a first step, we surveyed Plain households on NBS use, access, and perceptions. The reported rate of NBS was 77% in 460 household respondents compared to over 99% in all Wisconsin newborns. The varied reported reasons for not having newborn screening will be discussed along with our partnership activities focused on improving NBS rates through educational and outreach programs.
An abnormal NBS for a genetic disorder does not confirm that a newborn has a genetic disorder. Definitive diagnosis often requires expensive genetic confirmatory testing. To improve acceptance of NBS and lower costs, our team developed low-cost genetic tests to provide rapid confirmatory testing for abnormal NBS results as well as carrier testing for couples.
We will discuss the academic-community health care delivery model used that provides follow-up testing and medical care for Plain children with genetic disorders through the Center for Special Children at the La Farge Medical Clinic. This academic-community health care delivery model provides accessible specialty care without travel to an academic center and genetic testing at a lower cost. Lastly, we will discuss our efforts to provide genetic testing for disorders that are not part of the NBS test panel. We will highlight the unique disorders and unexpected results identified through our work that will serve to guide practitioners throughout North America.
Jessica Scott Schwoerer is a clinical biochemical geneticist and assistant professor in the department of pediatrics at the University of Wisconsin School of Medicine and Public Health. Scott Schwoerer earned her medical degree from the University of Wisconsin School of Medicine and Public Health and completed her residency and fellowship at University of Wisconsin Hospital and Clinics. She is board certified in pediatrics, clinical biochemical genetics, and clinical genetics.
Current Practice and Future Directions for Early, Rapid, and Accessible Screening for Genetic Disorders in Wisconsin Plain Communities: A Model for All Newborns in the Era of Molecular Medicine
Mei Baker, MD
The goal of newborn screening (NBS) is to identify pre-symptomatic newborns with life-threatening disorders that can be successfully treated when detected early. Many disorders screened in newborns have a much higher incidence rate in Plain communities compared to the general population because of founder effects. In this presentation, I will discuss our twelve-year experience in Wisconsin Plain community newborn screening and highlight the steps being taken to achieve our goal of offering accessible, low-cost, rapid diagnosis of a broad range of medically actionable genetic disorders.
This effort began in 2006 with development of a rapid genetic test to confirm Maple Syrup Urine Disease (MSUD) in newborns caused by a founder or unique BCKDHA gene mutation. MSUD is part of the NBS, but I will discuss how this practice has allowed us to definitively diagnose MSUD infants within 10 hours after birth. This approach has been expanded through a collaborative community-academic effort and now provides genetic diagnostic and carrier low-cost testing services for other disorders. Lastly, I will provide an overview of our new initiative: development of a NBS-focused and multiple-utility Plain gene variants panel using next generation sequencing technology (“Plain NGS Panel”) and evaluation of Plain community acceptance and utilization of this panel.
The unique genetic and cultural aspects of Plain communities have provided rich opportunities to address early, rapid, and accessible molecular screening for genetic disorders within the context of NBS. We believe our study of the Plain NGS Panel will provide valuable information both in technology and in ethical/psychosocial aspects in the current evolving molecular medicine era.
Mei Baker is a professor in the department of pediatrics and codirector of the Newborn Screening Laboratory at the University of Wisconsin School of Medicine and Public Health. Her research interest is public health genetics and genomics, with a focus on applying and translating advanced biochemical and molecular technologies into routine newborn screening practice to enable public health laboratories to screen for new conditions and improve screening performance for the existing screened conditions.
The Implications of Family Planning on Maternal Health
Rachel Stein, PhD*
Lynne Cossman, PhD
Issues of birth spacing and family size have largely fallen from the attention of demographers in the 21st century. Many Americans are limiting their family size and controlling birth spacing with contraceptives. However, there are niches in society where contraception is not used regularly. One such example is in Amish communities. The choices Amish make about reproduction—both spacing and ultimate size—have repercussions for maternal health. Understanding the patterns of reproductivity among the Old Order Amish and the effect of these choices on health outcomes allows health care providers to more appropriately treat their patients from a culturally sensitive vantage point.
We use demographic data from the Ohio Amish Directory to examine the relationship between birth spacing, family size, and mortality. We focus on the population of women in one Old Order church district, located on the edge of the Holmes County settlement. The population includes 137 women born in the years 1891-1992. Our preliminary findings indicate that women who waited two years between their first and second child lived an average of six years longer than those who waited only one year between their first two children. Women who had ten or more children lived an average of five years less than those women who only had two children.
Old Order Amish women have not traditionally used birth control; however, recent studies indicate women who are aware of the options for birth control are more likely to use these options. We would expect the patterns of birth spacing and number of children to change over time as information on birth control options have become more available. We do not find evidence to support a change in reproductive patterns. In this Amish community, the average number of children has remained consistent at five children across several cohorts of women. Birth spacing has also remained consistent over time, with an average of two years between the births of the first two children. Since our results indicate that larger families and tighter birth spacing both have negative health effects for mothers, information on birth control options and how birth control is linked to maternal health should be provided to Amish women in an accessible fashion.
Rachel Stein is an associate professor of sociology at West Virginia University, in Morgantown. Her research interests include Amish culture, rural criminology, and the scholarship of teaching and learning.
Assessing Functional Health within the Amish Population—A Pilot Study
Karen L. McCrea, DNP, APRN, FNP-C
Amy Culbertson, DNP, APRN, FNP-BC
Studies exploring overall health of Amish communities have been extremely rare. Multiple barriers exist, such as overall lack of preventative care and routine health visits, and common health care markers such as disease prevalence and vaccination rates cannot be accurately obtained.
Recognizing that overall quality of life cannot always be determined by evaluating laboratory tests and disease markers, Dartmouth developed the cooperative functional health assessment charts (COOP). The tool assesses eight domains of health—physical fitness, emotional problems, daily activity, social activities, pain, overall health, social support, and quality of life—on a Likert-type scale. The Dartmouth COOP charts have a proven track record of reliability and validity across a diverse set of health issues, ethnic groups, and languages. Our literature review found no evidence that the charts have been utilized within the Amish population, but did locate one study evaluating the functional health status of an entire non-Amish village.
In our pilot study, married adults in two Amish districts were invited to complete the Dartmouth assessment. Overall, a 93% participation rate was achieved. The data was then compared to the non-Amish community data. No statistical difference in perceived health was noted in all domains except one. The exception was the measure of social support, which demonstrated superior outcomes within the Amish districts.
This study serves as a gateway to proving reliability and validity of the Dartmouth COOP charts in Amish society. It also provides a template for measuring health status in a population that presents unique challenges to traditional health parameters.
Karen L. McCrea is an assistant professor of graduate nursing at Georgetown University in Washington, DC, where she teaches and mentors in the family nurse practitioner program, and a family nurse practitioner in Gloversville and Cooperstown, New York.
Amy J. Culbertson is an assistant professor of graduate nursing in the family nurse practitioner program at Georgetown University in Washington, DC, and a family nurse practitioner at the Englewood Community Clinic in Englewood, Florida.
A Thematic Analysis of Selected Health Promotion Topics in an Old Order Mennonite Community Using the Community-Based Participatory Research Model
M. Eve Main, DNP, ARNP-BC*
M. Susan Jones, PhD, RN, CNE, ANEF
Dawn Garrett-Wright, PhD, PMHNP-BC, CNE
Matthew Hunt, EdD
Kentucky is home to many Old Order Mennonite (OOM) and Amish settlements. In an academic practice-partnership, one OOM community in south-central Kentucky has hosted monthly health promotion days for over 17 years. Using a community-based participatory model, the community members select the health promotion topic each month. This collaborative approach allows Western Kentucky University faculty and/or staff members to identify the most appropriate person to lead the discussion.
A retrospective thematic analysis of topics chosen from 2001 to 2018 was completed by four researchers experienced in working with the Anabaptist population. Each investigator became familiar with the data, generated initial codes, and examined for themes. All investigators convened to review, define, and identify common themes and compelling examples of the theme. The results were then shared with the Plain community members for verification.
A preliminary analysis indicates a predominance of topics on self-care for illness and injury, the impact of communicable diseases, health lifestyle practices (nutrition, sleep, preventive screening), communication, and mental health conditions. Theme identification and/or verification by the community may yield insights into this populations’ understanding of well-being, mental health, and disease prevention as well as missed opportunities for health promotion. These findings may also aid other academic partnerships in developing similar partnerships.
M. Eve Main is a professor at Western Kentucky University’s School of Nursing.
Keith Wright, MD
Janelle M. Zimmerman, RN
This seminar will present a framework for understanding the Old Order community’s beliefs around health care and alternative medicine. Additional interviews with health care practitioners, including nurses, physicians, chiropractors, social workers, and herbalists, provided a lens into common frustrations and concerns from the health care perspective.
Practice runs the gamut from strict adherence to American Medical Association guidelines to serious mistrust of all medical practitioners, from mistrust of herbal medicine to total reliance on herbals, from careful avoidance of all potential occult practice to embracing almost any practice without regard for occult connection. Beliefs around health care are just as varied, with explanations ranging from standard biology text style, to esoteric explanations derived from a blend of eastern mysticism and rural legend, to shrewd observations of cause and effect. Even more intriguingly, individuals do not adhere to a single explanation or practice but pick and choose based on circumstances. Thus, one woman may always seek antibiotic therapy for a bladder infection but treat her child’s earache with a natural remedy, while preferring “pain pulling” (also known as “brauche”) for colic. Cost and availability also influence decisions, often tipping the scale toward alternative practices. A burn therapy using burdock leaves and a specially formulated salve is almost universally accepted in the Plain community and is even gaining traction in several hospitals, providing a fascinating example of simultaneous cooperation and bargaining between the Plain community and health care systems. Understanding the Old Order approach to health care requires acknowledging the multiplicity of truths that community members hold.
Keith Wright is associate medical director of quality and innovation, WellSpan Health.
Janelle M. Zimmerman is a staff nurse with Bayada Pediatrics in Lancaster, Pa.