Amish family care for children with chronic illnesses: an ethnography

The purpose of this study was to understand the cultural context in which Amish families manage the care of a child with a chronic illness and how it frames the interface with the larger health care delivery system outside their communities. The aims of this study were to describe Amish families' understanding of their children's chronic illnesses, and to describe Amish families' health management and health seeking behaviors for their children within the Amish community and with health services outside their community.

Ethnographic research methods were used to paint a cultural portrait of individuals and families, using data sources such as formal and informal interviews with participants, participant observations in the Amish community and family homes, Amish newspapers, and direct observations in health care clinic settings. Informants in this study included Amish families, Amish community members, and health care providers to illustrate commonalities and differences in perspectives on the chronic illness management for children. The study made use of ethnographic analysis, guided by thematic and cultural narrative techniques, to describe Amish family management for children with chronic illnesses in a way that pulls forward how their cultural background is involved in their behaviors and experiences.

The results of this study highlight several points: a) the Amish community influences how families understand and appraise concern for their children's illnesses, and families prioritize children's function as a measure of health/illness and see children as ultimately in the hands of God; b) minimal entanglement with the health care community allows for children to be as normalized as possible into the everyday life of the Amish community; c) families prefer to use home remedies to lower costs, potentially prevent the need for health services, and alleviate their child's symptoms in their own homes and community; d) when seeking health services, families prefer treatments they can manage in their homes, health care providers who are knowledgeable about the use of Amish home remedies for their children, and the ability to make health decisions in consideration of the impact to the greater Amish community.

To provide culturally competent care for Amish children, this study describes provider competencies needed to understand and accommodate the child's family cultural orientation, values, beliefs, and health care practices into cooperative care planning. One of the most significant attributes for providers to understand when working with Amish families is their collectivist perspective. As collectivists, these families may place the ultimate Amish community goals of believing in God, separation from society, and traditional lifestyle choices over their own when caring for children with chronic illnesses. This is a difficult competency for health care providers who function within a larger medical legal system that requires the placement of individuals above other considerations. It is at the intersection of these two cultures that this study is situated.