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research-article2015

TCNXXX10.1177/1043659615613417Journal of Transcultural NursingHess

Education Department

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

Journal of Transcultural Nursing 1­–8 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043659615613417 tcn.sagepub.com

Rosanna F. Hess, DNP, RN1

Abstract 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. Keywords Amish, burn care, participatory research approach, case report Amish, distinct by their horse and buggy travel, plain dress, and German dialect commonly known as Pennsylvania Dutch, number over 250,000 across the United States and Ontario, Canada (Caldwell, 2012). This diverse Anabaptist subculture differs from other North American communities in that they do not use electricity, do not participate in military service, limit formal education to Grade 8, and have no central church hierarchy. The Amish emerged in Europe in the early 1500s during the Protestant Reformation. They began immigrating to the United States in the 1700s after enduring severe religious persecution for nearly two centuries (Hurst & McConnell, 2010; Kraybill, 2001). They are one of the fastest growing faith-based groups in the United States, likely to double in size in the next 20 years (Donnermeyer, 2015). Amish live in vibrant rural communities and are known for their hard work and entrepreneurial innovation. The 35,000 who reside in Holmes and surrounding Ohio counties make up the largest concentration of Amish in the world. In 2008, a group of Amish in this region of Ohio, known locally as burn dressers, initiated a project with health care professionals to document the outcomes of their burn care using the Burns and Wounds (B&W) Ointment™ burdock leaf therapy (Amish Burn Study Group, Kolacz, Jaroch, Bear, & Hess, 2014). Information on the efficacy of B&W burdock leaf dressings would have remained at the anecdotal level if not for these Amish caregivers who ardently desired to decrease suffering by sharing their knowledge. They had observed that patients under their care seldom used analgesics and rarely experienced pain during dressing changes in sharp

contrast to conventional burn care (Kornhaber & Wilson, 2011; Malloy & Milling, 2010; Morris, Louw, & GrimmerSomers, 2009; Smith, Murray, McBride, & McBride-Henry, 2011). The B&W burdock leaf therapy originated with an Amish man named John Keim (Keim, 1999). This herbal-based burn care technique was born out of Keim’s intense desire to alleviate suffering associated with hospital-based care using opiates for pain management and scrub tanks and skin grafts for wound care. After discovering the efficacy of the B&W ointment, whose ingredients include honey, comfrey, beeswax, lanolin, aloe, lobelia, olive oil, wheat germ oil, and white oak bark (Amish Burn Study Group et al., 2014), and the burdock leaf for pain reduction (Chan et al., 2011) during dressing changes, Keim trained hundreds of his fellow Amish to use this method (“Burn Certification List,” 2008). A case report with lessons learning during the Amish Burn Care Project (ABCP) is presented here as a chronological narrative within a participatory research framework (Smith, Rosenzweig, & Schmidt, 2010). Though the treatment described here was used exclusively by Amish, the positive outcomes realized during this collaborative project will interest any nurse who strives to provide culturally

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Research For Health, Inc., Cuyahoga Falls, OH, USA

Corresponding Author: Rosanna F. Hess, DNP, RN, Research For Health, Inc., 4321 Northampton Road, Cuyahoga Falls, OH 44223, USA. Email: [email protected]

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congruent care and lay and professional caregivers involved in the treatment of burns and wounds.

Literature Review Amish acknowledge the benefits of a full spectrum of treatment choices, from homemade remedies to prescription medications, to genetic testing, and the latest robotic surgery. They prefer to first use herbal supplements and natural remedies to treat a variety of medical conditions including burns (Cuyύn Carter et al., 2012; Main, Williams, & Jones, 2012; Reiter et al., 2009). Amish tend to be at greater risk for burns because of frequent exposure to open flames, combustible fluids, and hot water while farming, cooking, canning, and recreating (Rieman & Kagan, 2012). In a study comparing burns among 2,972 children (Rieman, Hunley, Woest, & Kagan, 2008), Amish children had a higher incidence of burns than non-Amish children, attributed to ignition of flammable materials and clothing, and to hot liquids not related to cooking. Amish girls in particular had more extensive and deeper burn injuries than non-Amish children, requiring longer hospitalization times. Pain management during burn care has historically been and remains a challenge. Numerous studies have been conducted to decrease or alleviate pain and anxiety before and during dressing changes. Distraction techniques such as virtual reality (Malloy & Milling, 2010), video gaming (Nilsson, Enskär, Hallqvist, & Kokinsky, 2013), medical play (Moore, Bennett, Dietrich, & Wells, 2015), relaxation breathing (Park, Oh, & Kim, 2013), hypnosis (Sliwinski, Fisher, Johnson, & Elkins, 2013), and music (Tan, Yowler, Super, & Fratianne, 2010) have been used to manage pain during burn dressing changes with varying levels of success. Combinations of analgesics and anesthetics are also used during burn care (Norambuena et al., 2013). Selig et al. (2012), in a study seeking the “ideal” burn wound dressing, found that surgeons wanted a dressing that was pain free during dressing changes, nonadherent to the wound, easily removed, had antimicrobial activity, was absorbent, came in varied sizes, and needed to be changed infrequently. Amish burn dressers believe they have such a dressing when using B&W ointment and burdock leaves. They initiated the ABCP to document and present their care and its outcomes in a way that health care professionals would be willing to consider their claims of efficacy. Anecdotal accounts of the successful use of the B&W burdock leaf therapy are common in The Budget, a weekly newspaper published in Sugarcreek, Ohio, and in Plain Interests, a monthly newspaper that originates in Millersburg, Pennsylvania. Cases using this treatment have also been described in medical and nursing journals. Hammoud, Cockrell, and Hinthorn (2009) reported the survival of a 39-year old Amish woman who was treated with B&W and burdock leaves for burns over 56% of her body. Kahn, Demme, and Lentz (2013) detailed the ethical dilemma that faced their medical team when family wanted

an Amish man with burns over 75% of his body to be treated with this herbal-based therapy. Lee and Ruth-Sahd (2011) described the use of this treatment in conjunction with surgical care to treat an Amish man with extensive wounds suffered in a farming accident. Main et al. (2012) reported survey findings from 32 Anabaptist households. Respondents reported low pain levels during dressing changes and healing of even severe burns using this therapy. A pilot study describing the research component of the ABCP (Amish Burn Study Group et al., 2014) reported outcomes for five Amish patients suffering first and second degree burns. These patients experienced virtually no pain during dressing changes, none of the burns became infected, and healing times were similar to conventional treatments for burns of comparable severity.

Participatory Research Among the Amish The use of participatory research methods is not new among the Amish. Amish liaisons recruited participants from their own communities for studies on diabetes (Hsueh et al., 2000) and the human genome (Hsueh et al., 2001). A participatory approach was also used to resolve differences between the Canadian government and Amish in Ontario on agricultural regulations and land use (Bennett, 2003). Amish farmers, government representatives, and researchers used participatory methods in watershed management in Ohio (Parker, Moore, & Weaver, 2009). Unique to the project presented here is the fact that the Amish themselves took the initiative to document their burn care with photographs and then sought collaboration with health care professionals and academic researchers to promote culturally congruent health care. Though a classic community-based participatory research model was not embedded in the project at its inception, several key participatory principles were gradually incorporated into it: building on resources and strengths within the community; collaboration in all phases of research; integration of action and knowledge for the shared benefit of all participants, promotion of colearning, and dissemination of knowledge gained to all participants and beyond (Hartwig, Calleson, & Williams, 2006). Several participatory parameters are intertwined below in the ABCP case report : its origins, its participants, the scope of their participation, project activities and outcomes, and its future potential (Smith et al., 2010). Data sources used to construct this narrative included archival documents of meetings and events, the research consultant’s participant observation in project activities, transcripts of interviews conducted with team members, and a focus group of ABCP partners convened during the project’s final phase. Direct quotations support descriptions of the phases and thematic findings, giving voice to numerous colleagues (Smith et al., 2010). Participants in the ABCP were Amish community leaders and Amish burn dressers in Holmes County and Wayne County,

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Hess Ohio, the chief executive officer (CEO), the chief nursing officer (CNO), registered nurses (RNs), physicians, and the Amish advocate at Pomerene Hospital (PH), Millersburg, Ohio, and a nurse research consultant (NRC). The CNO, nine RNs, the NRC, and six Amish burn dressers were participant researchers. The hospital’s board of directors and its medical board granted ethical approval for the research component of the project.

Case Report Based on Cargo and Mercer’s (2008) participatory research framework, the activities of the ABCP are organized into four phases: engagement, formalization, mobilization, and maintenance. The author added a fifth phase, expansion, based on activities that occurred after the research study was completed (refer to Table 1 for a timeline). The nature of these phases is flexible and fluid (Cargo & Mercer, 2008; Casey, 2007; Smith et al., 2010;).

Subsequently, one of the hospital’s surgeons agreed to meet with the Amish to discuss their request. Attendance at a meeting in 2009 included the surgeon, a member of the local Amish Church Fund, an Amish burn dresser, a wound care nurse, and the hospital’s Amish advocate. The Amish provided a history of the B&W burdock leaf therapy, and photographs of burn patients they had successfully treated the previous year. They again expressed their desire that this therapy be permitted at the hospital. Medical personnel at the meeting stressed the need for clinical guidelines to be put in place in the emergency department (ED) if the proposal were accepted. Discussion also included the formation of a research team. Consequently, a research study proposal was drafted. Later, the same year, the author attended a burn care training session led by John Keim. There she learned that the Amish burn team wished to document this therapy and bring it to the attention of health care professionals. She expressed interest in working with them. Subsequently, one of the Amish leaders spoke to the hospital’s CEO. The author was hired as the project’s research consultant several months later.

Engagement Engagement was the phase during which familiarization with each other’s “context, people, culture, and priorities” took place (Cargo & Mercer, 2008, p. 335). Key to the project was the initiative the Amish took to launch this effort soon after their training in early 2008 to use the B&W burdock leaf therapy. They eventually organized themselves into the Holmes Burn Care Team. Several Amish leaders approached the CEO of PH with a proposal to permit Amish burn dressers to care for Amish burn-injured patients with the B&W burdock leaf therapy in the hospital under medical supervision. This request was based on what they knew was already taking place in Michigan and Pennsylvania. One Amish leader expressed their vision this way. I think behind everything [we are doing in this project] is the idea that someday burn care will change. Burn care will change through the pressure of a small group of people that showed that we can actually do things differently without anybody dying; and people living better. We want our people to help themselves without as much medical intervention. We also hope that we can influence the larger world to think differently about how [burn care] is done.

Because Amish are members of the hospital’s board of directors and a level of trust was already in place, the CEO was willing to consider the proposal. He told the NRC, We listen to [them]; [The Amish] want to participate in [their health care]. They don’t want it shoved [at them]. They’re very well read and they take interest in it. They like to go to alternative medicine. That’s how we saw B&W. Who am I to say that it’s any better than what we’re doing? That’s why we wanted to get involved in this; because our mission is to help the community in their health care needs.

Formalization Formalization was the phase in which the partners officially standardized policies and procedures. During the following year, the hospital’s CNO and the NRC formalized the research proposal. They developed a consent form which was revised by the hospital’s legal counsel and Amish leaders to meet legal and cultural standards. A recruitment brochure, enrollment flow chart, and case report form were crafted, reviewed, and revised by the Amish burn dressers and NRC. Changes included adding culturally appropriate images on the brochure and streamlining the flow chart. The research proposal was presented to the hospital’s board of directors and its medical board. The consent form was revised again to clarify inclusion and exclusion criteria. Almost 2 years after the first proposal the research study received ethical approval. The NRC received ethical approval later in the project to interview team members. Next members of PH administrators met with Amish bishops. About that meeting the CNO said, I spent some time talking to [the bishops and their wives] about what [the burn dressers and hospital] have planned and what the process is going to be. I had several of them tell me that they were very excited and hopeful—not that they wanted someone to have a burn—but they were excited that they were able to partner with the hospital and have the support of the hospital.

Mobilization During the mobilization phase research study protocols were implemented. Information about the research study was publicized in local newspapers, announced at a community safety day, and shared by word of mouth. Seven nurses employed at

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Table 1.  Timeline, Participatory Activities, and Lessons Learned During Amish Burn Care Project. Phase (years) Engagement (2008-2009)

Formalization (20092010)

Mobilization (2010-2011)

Examples of participatory activities Amish burn dressers document burn care and outcomes with photographs then propose burn care and research initiative to hospital CEO CEO convenes working group Physician and Amish draft preliminary research proposal Hospital hires nurse researcher as project consultant Nurse research consultant validates plan as type of participatory research CNO observes burn care on home visits at invitation of Amish burn dressers CNO, nurse researcher consultant, and Amish formalize research proposal and present it to physicians Ethical approval granted by hospital directors and medical board   Team of burn study nurses (RNs) is created

Expansion (2013-present):

Nurses and Amish burn dressers publicize research study in community Hospital education department rolls out computer-based module to teach all hospital nurses about B&W therapy and research study protocol Enrollment of burn-injured Amish in pilot study begins fall 2011 Nurses assess burn-injured Amish in emergency department and homes Nurses and dressers meet regularly to maintain momentum Protocol continues Analysis of data from pilot study is completed Multidisciplinary team presents project at nursing conferences

Goal: To get B&W burdock leaf therapy accepted for hospitalized Amish burn-injured in local hospital and in regional burn unit

Team members explaine project to staff at regional burn units Outcomes of pilot study are published Potential for telemedicine link is being discussed Other Amish-initiated research topics are being discussed

Maintenance (2012-2014)

Lessons learned Amish burn dressers recognized their limitations to care for severely burned people Previous collaboration between hospital and Amish community paved way for this new initiative Multidisciplinary collaborators strengthen support for project Engagement takes time   Willingness of CNO to observe Amish treating burns in homes built trust Learning more of each other’s culture helped develop appropriate consent, publicity, and datacollection forms Education of physicians was crucial for ethical approval Formalization takes time Attending community events together showed public collaboration is authentic Nurses gained empathy for Amish who are often misunderstood Nurses learned “community” from Amish burn dressers Openness to procedural modifications was key to progress Mobilization takes time Partners had to stay flexible and open to modifications Maintenance requires continual revitalization   Team presentations of project built team solidarity and demonstrated participatory concepts to audiences Dissemination of process and findings increased visibility and knowledge Legitimate change is possible Resistance means there is more to accomplish  

Note. CEO = chief executive officer; CNO = chief nursing officer; RNs = registered nurses; B&W = Burns & Wounds.

PH joined the burn study team; one was appointed the project’s lead nurse. The NRC instructed them on ethical research practices including recruitment and consenting, and on proper data collection and storage procedures. The NRC also contacted nurses at a regional burn center for advice on reliable pain measurement instruments. The RNs completed certification in advanced burn life support. The CNO, PH’s staff educator, and the lead RN developed a computer-based educational unit to inform the entire nursing staff about the study and also to increase the nurses’ knowledge of Amish culture. The module

consisted of a history of the ABCP, the B&W burdock leaf treatment protocol, the roles of the Amish burn dressers, the physicians, and the nurses in the research study, and a quiz to verify knowledge acquisition. Patient enrollment in the research study began after 3 years of preparation. The process of enrollment started with a phone call from a burn-injured person or a family member to a burn dresser. They met at the ED. Once stabilized, the patient was evaluated for inclusion in the study. The RN explained the study to the patient and/or guardian. The Amish

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Hess dresser repeated the explanation in Pennsylvania Dutch if necessary. Participation in the study was voluntary. Signed consent was required. Only Amish people were included. A patient was excluded if he or she had a burned body surface greater than 25%, burns of the fingers, genitals, and circumference of any body part, was pregnant or nursing, or had inhalation burns. The burns were photographed. (Photography is usually not permitted among the Amish but church bishops allowed it because it was important to document the healing process. An Amish leader explained it this way: “We submit our own values and standards to achieve a greater good.”) The dressings were then applied by the Amish burn dresser using their supplies stored in the ED. When the patient was discharged from the ED, he or she initially went to the home of a burn dresser or the burn dresser stayed overnight at the patient’s home to insure close observation and to change dressings every 12 hours. A RN and burn dresser met with the patient the first few days to assess the burns during dressing changes. The RN noted body temperature, condition of the wound, and pain levels, and photographed the burns.

Maintenance The fourth phase, maintenance, involved sustaining the momentum of relationships, infrastructure, and the capacitybuilding process, as well as producing outcomes (Cargo & Mercer, 2008). Burn dressers cared for burn-injured Amish at home or in the ED. They learned when burns were too severe for home care and did their best to persuade patients to go to the hospital for treatment. This was a continual challenge. Dressers encouraged study enrollment when inclusion criteria were met. Each patient who was eligible to be enrolled in the study was required to be assessed in the ED. The lead RN scheduled burn study nurses to see patients and coordinated follow-up home care. She chaired meetings of dressers and nurses and kept everyone abreast of project activities. She was responsible for the inventory of burn dressers’ supplies in the ED and communicated with them when more were needed. A problem arose during the maintenance phase related to payment for burn care in the ED. The Amish are prudent health care consumers, usually paying medical procedures out of pocket (Strouse, 2015). Burn dressers volunteer their time and expertise in their community so burn-injured patients were reluctant to go to the ED because of the additional cost. A burn dresser voiced this concern to the lead nurse. The RN described it this way: [Pomerene Hospital] is known for the “packages” that we offer to self-pay patients [like the Amish]. There is a predetermined price for the services they receive; they pay in full at the end of their procedure or hospitalization. One of the burn dressers suggested there be a similar package for our burn study patients.

Hearing the concerns of the community, the hospital’s finance department developed a package price specifically

for ED burn care. This plan was implemented after approval by the Amish burn dressers.

Expansion To end the description of the ABCP in the maintenance phase might leave the impression that its activities ended after the research study was completed. This was not the case. The expansion phase meant going beyond the original vision to share new knowledge with others. The RNs taught the burn dressers to document the burn event, take a patient health history, and measure patients’ pain levels. The burn dressers promoted burn prevention and educated the community on the importance of properly cooling burns. Team members jointly disseminated findings of the research study at two regional and one international nursing conference. Those outcomes along with an in-depth description of the botanicals of burdock leaves and B&W ointment were also published (Amish Burn Study Group et al., 2014) so that other practitioners could learn of this therapy’s potential to decrease pain during dressing changes. A burn dresser, the lead RN, and the NRC participated in a virtual journal club meeting (conference call) hosted by the American Holistic Nurses Association and discussed the research study with nurses across the United States. During this phase, the Amish community started a burn care fund to compensate burn dressers for their travel expenses to and from patients’ homes. The Amish Church Fund also now reimburses patients for expenses incurred during burn care. Last but not least, the team met with directors of regional burn units to communicate the Amish community’s desire for Amish patients to continue on B&W burdock leaf therapy when admitted to hospital. One regional burn unit now accepts Amish patients in the ED who were initially treated with B&W ointment and burdock leaves. In-patient care using this therapy is not yet a reality in the region. Plans for future research are ongoing including using telemedicine for case surveillance.

Lessons Learned After completion of the research component of ABCP, partners took part in a focus group convened by the NRC to discuss their experiences and share lessons they had learned. Five lessons that emerged from that discussion illustrate community-based participatory research principles. Those lessons are detailed with the timeline in Table 1.

Community-Initiated Research Led to Legitimate Change A hallmark of participatory research is research done by and for the community (https://depts.washington.edu/ccph/cbpr/u1/ u11.php). Amish community members initiated the research and then sought help from trained researchers to implement

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their vision. The team learned that the community’s push to scientifically document this nonconventional burn care method led to its wider acceptance.

Working Together for Change Took Time Some project partners felt the ABCP’s progress was too slow; others felt it was too radical. Reviewing the 7 years and five phases of the project revealed that taking time to bring about change has its advantages: to build strong consensus, to build trust and respect, to learn new skills, and to work through challenges and obstacles. The hospital’s CEO saw the pace of change this way: [We] were all catalysts in keeping it moving forward . . . we needed every one of them because it gave it more credibility as you added a person. And it ultimately helped the [hospital] Board feel comfortable. I think it might have been too long, but what I think is that the coalition was built correctly. Maybe sometime I’ll have a discussion with some of the Amish [project leaders] and say, “Now this is what really made it successful— the time you took to make other believers.”

Team Members Grew in Mutual Trust and Respect for Each Other Mutual trust is one of the core elements of a participatory research project (Israel et al., 2010). During the ABCP, ED staff learned to trust the dressers to provide burn care without endangering their patients. Because they were trusted, Amish dressers gained more respect for health care professionals who were willing to challenge the status quo. One Amish man said, “[In my opinion], the mark of a professional is to yield to advances rather than to hang on to barbaric practices.” Nurses and dressers discussed difficult cases together such as a patient who left the ED against medical advice. Sometimes the partners first met separately to discuss issues such as challenges involved in transferring patients to regional burn units. These times of “hidden discourse” (Wallerstein & Duran, 2010) led to added respect for each other when they resolved the situation. The development of a payment plan for ED services described above is another good example of mutual respect.

Cultural Humility Brought Personal and Professional Growth Cultural humility is the process of developing and maintaining “mutually respectful and dynamic partnerships” (Tervalon & Murray-García, 1998, p. 118) based on self-critique and self-reflection. One burn study nurse realized greater empathy for her Amish counterparts. She said, “I learned to appreciate how Amish feel when they are looked down on as quacks or different [because of their beliefs and practices].” Another nurse was touched by the “spirituality”

of the community bond he observed as burn dressers worked together in the home of a burn patient. An Amish burn dresser expressed her personal growth this way: It makes us feel very, how can I word it? “Unworthy,” that [the hospital] is working with us like this. We’re eighth-grade educated Amish. We can go into the hospital—it makes you feel very humble. It’s a very, very good feeling and a lot of support for us. It just makes our job a lot easier.

The NRC was particularly impressed that the Amish volunteered their burn care skills in their community and included health care professionals in their quest to alleviate suffering.

Capacity Was Built Through Mutually Supported Efforts Individual and community capacity was developed in several areas during this project. Burn study RNs learned advanced burn care techniques and research methodologies as well as more about the Amish culture. The burn dressers gained negotiation and public-speaking skills within the health care community and learned to assess burn-injured patients’ overall medical condition. The NRC learned to put into practice principles of participatory research, particularly the inclusion of all team members in the dissemination of the project’s processes and research findings (Israel et al., 2010).

Conclusion The four phases of Cargo and Mercer’s (2008) participatory research approach, engagement, formalization, mobilization, and maintenance, are evident in this case report of the ABCP. The fifth phase, expansion, expresses team members’ desire to continue to push for change. Partners learned to trust in, commit to, and gain knowledge from each other. They grew personally and professionally, while promoting changes to burn care in their community. Principles of participatory research experienced during this project are transferable to other community health situations when people dedicate themselves to respect for and willingness to incorporate each other’s cultural beliefs, values, and practices in the project. Acknowledgments I would like to express my gratitude to Amish and nurse colleagues on the Amish Burn Care Team for their collaboration in this project. I also appreciate Marvin Wengerd, Monica Bear, Nicole Kolacz, Carolyn Dunbar, and Rebecca Cruise for their input during the preparation and revisions of this article.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Hess Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The author’s work on this project was financed in part by Pomerene Hospital, Millersburg, Ohio.

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

This case report describes the phases of an Amish Burn Care Project and the lessons learned throughout the process...
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