Genetic versus stress and mood determinants of sleep in the Amish.

Sleep is essential to the human brain and is regulated by genetics with many features conserved across species. Sleep is also influenced by health and environmental factors; identifying replicable genetic variants contributing to sleep may require accounting for these factors. We examined how stress and mood disorder contribute to sleep and impact its heritability. Our sample included 326 Amish/Mennonite individuals with a lifestyle with limited technological interferences with sleep. Sleep measures included Pittsburgh Sleep Quality Index (PSQI), bedtime, wake time, and time to sleep onset. Current stress level, cumulative life stressors, and mood disorder were also evaluated. We estimated the heritability of sleep features and examined the impact of current stress, lifetime stress, mood diagnosis on sleep quality. The results showed current stress, lifetime stress, and mood disorder were independently associated with PSQI score (p < .05). Heritability of PSQI was low (0-0.23) before and after accounting for stress and mood. Bedtime, wake time, and minutes to sleep time did show significant heritability at 0.44, 0.42, and 0.29. However, after adjusting for shared environment, only heritability of wake time remained significant. Sleep is affected by environmental stress and mental health factors even in a society with limited technological interference with sleep. Wake time may be a more biological marker of sleep as compared to the evening measures which are more influenced by other household members. Accounting for nongenetic and partially genetic determinants of sleep particularly stress and mood disorder is likely important for improving the precision of genetic studies of sleep.

COVID-19 Outbreak in an Amish Community - Ohio, May 2020.

In the United States, outbreaks of SARS-CoV-2, the virus that causes coronavirus disease 2019 (COVID-19), were initially reported in densely populated urban areas (1); however, outbreaks have since been reported in rural communities (2,3). Rural residents might be at higher risk for severe COVID-19-associated illness because, on average, they are older, have higher prevalences of underlying medical conditions, and have more limited access to health care services.* In May, after a cluster of seven COVID-19 cases was identified in a rural Ohio Amish community, access to testing was increased. Among 30 additional residents tested by real-time reverse transcription-polymerase chain reaction (RT-PCR; TaqPath COVID-19 Combo Kit),† 23 (77%) received positive test results for SARS-CoV-2. Rapid and sustained transmission of SARS-CoV-2 was associated with multiple social gatherings. Informant interviews revealed that community members were concerned about having to follow critical mitigation strategies, including social distancing§ and mask wearing.¶ To help reduce the ongoing transmission risk in a community, state and county health department staff members and community leaders need to work together to develop, deliver, and promote culturally responsive health education messages to prevent SARS-CoV-2 transmission and ensure that access to testing services is timely and convenient. Understanding the dynamics of close-knit communities is crucial to reducing SARS-CoV-2 transmission.

Homeward Bound: A Case Series of Cross-Cultural Care at End of Life, Enhanced by Pediatric Palliative Transport.

For most families, the preferred location of death for their child is home, yet most children still die in the hospital. Many children with life-threatening and life-limiting illness are medically dependent on technology, and palliative transport can serve as a bridge from the intensive care unit to the family's home to achieve family-centered goals of care. Palliative transport may also present an opportunity to prioritize cultural care and rituals at end of life which cannot be provided in the hospital. We describe a case series of pediatric patients from communities espousing markedly diverse cross-cultural values and limited financial resources. Specific cultural considerations at end of life for these children included optimizing the presence of the shared community or tribe, the centrality of healing rituals, and varied attitudes toward withdrawal of life-sustaining medical treatment. By addressing each of these components, we were able to coordinate palliative transport to enhance cross-cultural care and meaning at end of life for children with life-limiting illness.

Creating Culturally Competent and Responsive Mental Health Services: A Case Study Among the Amish Population of Geauga County, Ohio.

Providing effective mental health services requires knowledge about and cultural competence across a wide array of beliefs and practices. This study provides an example of a successful project to improve public mental health service delivery in an Amish community. County boards of mental health in a rural area of Northeast Ohio contacted researchers in 1998 to provide assistance in reaching the Amish community because of a concern that mental health services were not being utilized by the Amish population. Following meetings with community leaders, changes were made to improve the relationships of service providers and public funding agencies with the local Amish community, disseminate information about mental health concerns and services, and improve accessibility to mental health services. In 2013, a follow-up analysis of records found a 320% increase in public mental health service utilization by the Amish community within the first five years after these changes were made.

Older Adult Caregiving in an Amish Community.

Amish older adults represent a growing and understudied population whose current health practices, interactions with health care systems outside of their community, and care needs are unknown. Limited research exists on why, when, and how Amish older adults and their caregivers experience health care services outside of their family and community. The purpose of the current study was to describe and explore the perspectives of Amish caregivers caring for older adults and their experiences with health care services outside of their community. A qualitative phenomenological research design was used in combination with a community-based participatory framework with caregivers in a small, rural Amish settlement. Amish caregiving of older adults is a complex phenomenon that is influenced by cultural characteristics. Caregivers place significant cultural value on home caregiving, emphasize the experience as a blessing, and relate misunderstandings between themselves and outside health care providers as significant concerns. [Res Gerontol Nurs. 2018; 11(1):29-38.].

Understanding and Resolving Conflicting Traditions: A MacIntyrean Approach to Shared Deliberation in Medical Ethics.

The position of clinical ethicist exists to help resolve conflicts in the hospital. Sometimes these conflicts arise because of fundamental cultural differences between the patient and the medical team, and such cases present special challenges. Should the ideology of modern medicine reject the wishes of those who hold ideologies from differing cultures? How can the medical ethicist help resolve such conflicts? To answer these questions, I rely on the works of Alasdair MacIntyre. Using MacIntyre's philosophy, we can better understand why traditions exist, how conflicts arise, and how opposing traditions can collaborate in shared decision making. In order to overcome conflict, I conclude that MacIntyre's virtues of acknowledged dependence must be realized by the ethicist and those in disagreement over tradition. I use a case study of a young Amish patient to highlight the conflicts that arise and to help exhibit how shared decision making can be made possible.

Applying cultural safety beyond Indigenous contexts: Insights from health research with Amish and Low German Mennonites.

People who identify as members of religious communities, such as the Amish and Low German Mennonites, face challenges obtaining quality health care and engagement in research due in part to stereotypes that are conveyed through media and popular discourses. There is also a growing concern that even when these groups are engaged in research, the guiding frameworks of the research fail to consider the sociocultural or historical relations of power, further skewing power imbalances inherent in the research relationship. This paper aims at discussing the uses of cultural safety in the context of health research and knowledge translation with groups of people that are associated with a specific religion. Research with the Amish and Low German Mennonites is provided as examples to illustrate the use of cultural safety in this context. From these examples, we discuss how the use of cultural safety, grounded in critical theoretical perspectives, offers new insight into health research with populations that are traditionally labeled as minority, vulnerable, or marginalized, especially when a dominant characteristic is a unique religious perspective.

Evaluation of low immunization coverage among the Amish population in rural Ohio.

BACKGROUND: The Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Review included childhood immunizations among the 10 great public health achievements in the United States in the 20th century. Despite this acknowledged success, childhood immunization rates continue to be much lower in select populations. Amish communities have persistently lower immunization rates. Recent outbreaks in Amish communities include a 2014 measles outbreak in Ohio, resulting in 368 cases reported. A recent outbreak of pertussis in an Amish community in Ohio resulted in the death of a 6-week-old Amish baby. METHODS: A study was designed to determine the knowledge, beliefs, attitudes, and opinions of Amish parents relative to the immunization of Amish children. Data were collected through a questionnaire. Each potential participant was mailed a copy of a letter describing the proposed study. The questionnaire, a copy of the current immunization schedule, and a return stamped envelope were also included in the mailed packet. The study sample consisted of 84 Amish individuals who voluntarily filled out and returned questionnaires. RESULTS: The findings from the data analysis demonstrated that fear, especially concern over too many recommended immunizations and immunizations overwhelming the child's system, was the most frequent reported reasons for not having children immunized according to recommendations. CONCLUSIONS: Religious factors and access to care were not among reasons most reported. Designing an educational campaign for educating Amish parents on the risks and benefits of immunizations with focus on specific concerns may improve immunization rates.

Amish-Initiated Burn Care Project: Case Report and Lessons Learned in Participatory Research.

PURPOSE: This case report describes the phases of an Amish Burn Care Project and the lessons learned throughout the process. METHOD: Data sources to construct the case report included participant observation, interviews, archival documents, and a focus group. RESULTS: The narrative is organized into five phases of a participatory research approach: engagement, formalization, mobilization, maintenance, and expansion. LESSONS LEARNED: Community-initiated research led to legitimate change, working together for change took time, team members grew in mutual trust and respect for each other, cultural humility brought personal and professional growth, and capacity building took place through mutually supported efforts.

Haemophilus influenzae Type b Invasive Disease in Amish Children, Missouri, USA, 2014.

During 5 months in 2014, three Amish children in Missouri, USA, were diagnosed with invasive Haemophilus influenzae type b infection. Two were rural neighbors infected with a genetically similar rare strain, sequence type 45. One child had recently traveled, raising the possibility of maintenance of this strain among unvaccinated carriers in Amish communities.

Mammography-Seeking Practices of Central Illinois Amish Women.

Motivated by compelling, but scant, literature on high rates of breast cancer mortality among the United States Amish, a survey was conducted to examine mammography-seeking practices among Amish women. Inclusion criteria included age 40-70 years and membership of the Arthur, Illinois Amish community. Data were collected from this unique, socially isolated group through a mail questionnaire focusing on health history, mammography practices, and beliefs surrounding breast health. Sample mammography adherence and "ever mammogram" rates were compared with both the general population of the United States (U.S.) and other Amish communities in the U.S. Logistic regression on the "ever mammogram" variable showed that Amish women with knowledge of screening guidelines experienced an adjusted odds ratio (OR) of 5.26 [confidence interval (CI) 1.79, 15.45] for mammography screening compared to those without that knowledge. Participants who believed nutrition/diet causes breast cancer experienced an OR of 4.27 (CI 1.39, 13.11) for mammography and those who believed physical injury caused breast cancer had an OR of 3.86 (CI 1.24, 12.04) compared to women who do not hold these beliefs. Future research is needed to confirm and extend these results.

Cognitive profiles and heritability estimates in the Old Order Amish.

OBJECTIVE: This study aimed to establish the applicability of the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) in the Old Order Amish (OOA) and to assess the genetic contribution toward the RBANS total score and its cognitive domains using a large family-based sample of OOA. PARTICIPANTS AND METHODS: RBANS data were collected in 103 OOA individuals from Lancaster County, Pennsylvania, including 85 individuals without psychiatric illness and 18 individuals with current psychiatric diagnoses. RESULTS: The RBANS total score and all five cognitive domains of in nonpsychiatric OOA were within half a SD of the normative data of the general population. The RBANS total score was highly heritable (h=0.51, P=0.019). OOA with psychiatric diagnoses had a numerically lower RBANS total score and domain scores compared with the nonpsychiatric participants. CONCLUSION: The RBANS appears to be a suitable cognitive battery for the OOA population as measurements obtained from the OOA are comparable with normative data in the US population. The heritability estimated from the OOA is in line with heritabilities of other cognitive batteries estimated in other populations. These results support the use of RBANS in cognitive assessment, clinical care, and behavioral genetic studies of neuropsychological functioning in this population.

A Single-Case Study of Resiliency After Extreme Incest in an Old Order Amish Family.

This exploratory research brief presents a single case study of the resiliency of "Mary B." She grew up in an Old Order Amish family where isolation, secrecy, and patriarchy masked repeated sexual assaults by her older brothers that began at age 7. By the age of 20, Mary alleged she had been raped on more than 200 separate occasions by members of her Amish family. After years of pleading with her mother and church officials to intervene, she sought therapy outside the Amish community. This led to three of her brothers being incarcerated. Her family disowned her and she was banned from the Amish community, leaving with an 8th grade education and little more than the clothes she was wearing. In less than 2 years, Mary had moved to a new town, completed her GED, obtained a car and driving license, maintained a small home, and worked as a certified nursing assistant. She consented to tape recorded interviews and completed several quantitative diagnostic measures. Scores on the diagnostic measures placed her within the normal range on self-esteem, competency, depression, stress, social support, and life skills. Analysis of interviews revealed Mary rebounded from her past by reframing her experiences. Themes identified within the interviews supported 6 of the 7 types of resiliencies (insight, independence, initiative, relationships, humor, and morality) outlined in the therapeutic Challenge Model.

Seasonality shows evidence for polygenic architecture and genetic correlation with schizophrenia and bipolar disorder.

OBJECTIVE: To test common genetic variants for association with seasonality (seasonal changes in mood and behavior) and to investigate whether there are shared genetic risk factors between psychiatric disorders and seasonality. METHOD: Genome-wide association studies (GWASs) were conducted in Australian (between 1988 and 1990 and between 2010 and 2013) and Amish (between May 2010 and December 2011) samples in whom the Seasonal Pattern Assessment Questionnaire (SPAQ) had been administered, and the results were meta-analyzed in a total sample of 4,156 individuals. Genetic risk scores based on results from prior large GWAS studies of bipolar disorder, major depressive disorder (MDD), and schizophrenia were calculated to test for overlap in risk between psychiatric disorders and seasonality. RESULTS: The most significant association was with rs11825064 (P = 1.7 × 10⁻6, ß = 0.64, standard error = 0.13), an intergenic single nucleotide polymorphism (SNP) found on chromosome 11. The evidence for overlap in risk factors was strongest for schizophrenia and seasonality, with the schizophrenia genetic profile scores explaining 3% of the variance in log-transformed global seasonality scores. Bipolar disorder genetic profile scores were also associated with seasonality, although at much weaker levels (minimum P value = 3.4 × 10⁻³), and no evidence for overlap in risk was detected between MDD and seasonality. CONCLUSIONS: Common SNPs of large effect most likely do not exist for seasonality in the populations examined. As expected, there were overlapping genetic risk factors for bipolar disorder (but not MDD) with seasonality. Unexpectedly, the risk for schizophrenia and seasonality had the largest overlap, an unprecedented finding that requires replication in other populations and has potential clinical implications considering overlapping cognitive deficits in seasonal affective disorders and schizophrenia.

We rise out of the cradle into the grave: an ethnographic exploration of ritual, mourning, and death on a Hutterite colony.

The Hutterites are a closed ethnoreligious community whose funeral traditions have remained unchanged for centuries. Few researchers have had the opportunity to study this unique group. This study is an ethnographic exploration into the experience of child death and ritual on a Hutterite colony utilizing participant-observation and interviewing. Three recurrent themes emerged: ritual/tradition, spirituality/faith, and social cohesion and integration/group identity. Observed rituals are situated within the broader framework. While some aspects of the response to death may resemble those of mainstream culture, a deeper evaluation of descriptive and structural specifics reveals some important differences. Most of the cultural contrast is contained in concrete social enactment of death rituals, shared identity, and the immutable faith in God at the center of the Hutterite mourning process. These factors may help account for the low rates of mental disorders seen among Hutterites, even following traumatic events, and would be worthy of further investigation.

Analysis of the bereavement effect after the death of a spouse in the Amish: a population-based retrospective cohort study.

OBJECTIVE: This study investigates the association between bereavement and the mortality of a surviving spouse among Amish couples. We hypothesised that the bereavement effect would be relatively small in the Amish due to the unusually cohesive social structure of the Amish that might attenuate the loss of spousal support. DESIGN: Population-based cohort study. SETTING: The USA. PARTICIPANTS: 10,892 Amish couples born during 1725-1900 located in Pennsylvania, Ohio and Indiana. All the participants are deceased. OUTCOME MEASURES: The survival time is 'age'; event is 'death'. Hazard ratios (HRs) of widowed individuals with respect to gender, age at widowhood, remarriage, the number of surviving children and time since bereavement. RESULTS: We observed HRs for widowhood ranging from 1.06 to 1.26 over the study period (nearly all differences significant at p<0.05). Mortality risks tended to be higher in men than in women and in younger compared with older bereaved spouses. There were significantly increased mortality risks in widows and widowers who did not remarry. We observed a higher number of surviving children to be associated with increased mortality in men and women. Mortality risk following bereavement was higher in the first 6 months among men and women. CONCLUSIONS: We conclude that bereavement effects remain apparent even in this socially cohesive Amish community. Remarriage is associated with a significant decrease in the mortality risk among Amish individuals. Contrary to results from previous studies, an increase in the number of surviving children was associated with decreased survival rate.

From the barn to the operating room and back: the Amish way of life leads to improved throughput and outcomes following trauma.

BACKGROUND: The Amish culture is known for simple living, reluctance to use modern technology, and a heavy emphasis on church and family relationships. We hypothesized that the strong work ethic and social structure of the Amish would lead to improved outcome following trauma. METHODS: Trauma registry was queried for all patients from years 2000 to 2010. Patients separated into Amish versus non-Amish. Groups were compared using univariate logistic regression, with the first outcome variable being mortality and the second being hospital length of stay (LOS) greater than 5 days. Factors significant on univariate analysis were included in the multivariate models for the same dependent variables. RESULTS: From 2000 to 2010, our Level II trauma center admitted 18,337 trauma patients, 802 (4.4%) of whom were Amish. When adjusted for age of 65 years or older, Injury Severity Score (ISS) of 16 or greater, and the occurrence of at least one complication, the Amish are at 96% lower odds for having an overall hospital LOS greater than 5 days (odds ratio, 0.51; 95% confidence interval, 0.40-0.66; p < 0.001). The Amish have a 72% lower odds of dying following trauma, when controlling for age of 65 years or older, Glasgow Coma Scale (GCS) score of 13 or less, ISS of 16 or greater, and Revised Trauma Score (RTS) of 7 or less (odds ratio, 0.58; 95% confidence interval, 0.33-0.96; p = 0.036). The hospital LOS model had a receiver operating characteristic curve of 0.77, and the mortality model had a receiver operating characteristic curve of 0.88. CONCLUSION: When adjusted for injury severity, age, and physiology, the Amish have a 72% lower odds of dying following trauma than their non-Amish counterparts. When adjusted for injury severity, age, physiology, and complications, the Amish have a 96% lower odds of having an extended hospital LOS than their non-Amish counterparts. Understanding the unique social structure of the Amish population may allow scarce social services' resources to be shifted to more underserved areas. LEVEL OF EVIDENCE: Epidemiologic, level III.

Health literacy among the Amish: measuring a complex concept among a unique population.

The Amish have cultural practices that include formal education through the 8th grade. This study's purpose was to compare the health literacy among Amish to non-Amish adults living in Ohio Appalachia to understand its potential contribution to poorer health behaviors (e.g. lower cancer screening rates). Amish (n = 143) and non-Amish (n = 154) adults completed interviews as part of a lifestyle study. The rapid estimate of adult literacy in medicine (REALM) instrument (score range 0-66) was used and mean REALM scores were compared (t test) and correct pronunciation of each word was compared (Chi square test). Significance was considered at p < 0.001 because of multiple comparisons. Mean REALM scores among Amish males (53.3 ± 13.1) and females (56.2 ± 8.6) were significantly (p < 0.001) lower compared to non-Amish males (61.2 ± 9.8) and females (63.0 ± 6.2). Twelve percent of Amish participants read at or lower than a 6th grade level compared to 2.6 % of non-Amish participants. This study provides a glimpse into how culture may influence health literacy. Many Amish participants had limited or marginal health literacy. Innovative strategies that address inadequate health literacy and specific cultural characteristics are needed to improve health-related behaviors and outcomes among the Amish.

Amish revisited: next-generation sequencing studies of psychiatric disorders among the Plain people.

The rapid development of next-generation sequencing (NGS) technology has led to renewed interest in the potential contribution of rarer forms of genetic variation to complex non-mendelian phenotypes such as psychiatric illnesses. Although challenging, family-based studies offer some advantages, especially in communities with large families and a limited number of founders. Here we revisit family-based studies of mental illnesses in traditional Amish and Mennonite communities--known collectively as the Plain people. We discuss the new opportunities for NGS in these populations, with particular emphasis on investigating psychiatric disorders. We also address some of the challenges facing NGS-based studies of complex phenotypes in founder populations.