Perspectives From the First AAWC Global Alliance Project

Address correspondence to: Mary Jo Geyer, PT, PhD, FCCWS, CLT-LANA, C.Ped Limbtegrity™ LLC 1611 Merriman Court Pittsburgh, PA 15203 Phone: 412-496-7100 E-mail: maryjogeyer@mac.com

 

“See me, Feel me, Touch me, Heal me.”

     (from Tommy, The Who, 1969)    Those of you who came of age in the 1970s and 80s may remember the rock opera, Tommy, by The Who. I apologize to Pete Townshend for the use of his lyrics, but the metaphor was irresistible. Tommy, a deaf, dumb, and blind boy, experiences a miracle and regains his ability to perceive the world around him, just as my extraordinary experience in India has transformed me. As the leader of the first AAWC-HVO Global Alliance volunteer team, my perspectives on the merits and limitations of the project are offered here to encourage and inform those of you who may be interested in using your much needed skills to volunteer in a similar manner.

Background

   Thanks to the generosity of William F. Benter, I became the first recipient of a grant from the Benter Global Citizenship Project at Chatham University (Pittsburgh, PA), which funded the project. The project provided experiential learning for Chatham students, while simultaneously training healthcare professionals in wound and lymphedema management. What better way to promote students’ awareness of global issues and to foster international citizenship than through active participation in another culture? What better way to sustain our effort than to link our project to the AAWC-HVO Global Alliance?    India was selected as the site for the project because the Christian Medical College and Hospital (CMC) became an approved AAWC-HVO Global Alliance site in 2007. In addition to CMC’s interest in developing a specialized wound service, they were keen to learn multimodal methods to improve their management of lymphatic filariasis (LF). Lymphatic filariasis is a condition caused by mosquito-borne parasites, which commonly results in massively swollen legs and genitals, known as elephantiasis. There are 83 endemic countries, but almost 40% of all known cases are located in India. There are in excess of 120 million people worldwide afflicted with the disease, and the World Health Organization (WHO) has ranked LF as the second leading cause of chronic disability worldwide.¹    The WHO Global Programme to Eliminate Lymphatic Filariasis ([GPELF], www.filariasis.org) has 2 components: 1) stop the spread of infection by interrupting transmission by means of mass drug administration, and 2) alleviate the suffering of affected individuals. The bulk of funding for GPELF to date has been for mass drug administration. Our CMC project was focused on the second component and included training a group of 20 physicians, nurses, and physical therapists at the primary level; 20 community-based health officers at the mid-level, and informal caregivers at the field level. Wound management was largely taught incidental to the lymphedema treatment and focused primarily on hygiene, infection control, and treatment of fungal infections.

See me . . .

   My experience in India increased my awareness of the health worker crisis in developing countries and the threat to global health that has arisen because of this situation. There is an inequitable distribution of health workers throughout the world with severe imbalances both between developed and developing countries, as well as within countries between rural and urban areas. Fifty-seven countries, mainly in Asia and Africa, face a severe shortage. The WHO estimates that almost 4 million health workers are needed to fill the current gap.² The lack of well-trained, adequate, and available health workers is the single largest impediment to achieving pressing health needs across the globe.² The AAWC-HVO Global Alliance is making a direct investment in the training and support of health workers; you can be part of this effort.    In developed nations, it has taken many years for the hidden epidemic of chronic wounds to emerge as a priority for management. Lymphatic filariasis is primarily a disease of the poor, and in many endemic regions, morbidity management takes a back seat to HIV/AIDS and other communicable diseases. Recently, LF has steadily increased because of the expansion of slum areas and poverty, especially in Africa and the Indian subcontinent.¹ As is the case among many patients with chronic wounds, patients with LF are unable to work because they are physically incapacitated. Such patients often require help in performing day-to-day activities like walking or bathing. Lymphatic filariasis exerts a heavy social burden that is especially severe because chronic complications are often hidden and considered shameful. Individuals are severely stigmatized when their lower limbs and genitals are enlarged; and marriage, which is an essential source of security for many, is often impossible.¹    With the exception of endemic regions in India, general awareness of both the enormity of the LF problem and knowledge of multimodal management techniques is rather limited. Few skilled clinicians are available and opportunities for continuing education are rare. Plastic surgeons perform the majority of corrective surgeries for lymphedema despite poor outcomes and associated high costs. Community-based educational programs are needed to raise the clinicians’ awareness, as well as affected patients, regarding early identification and treatment of the disease.

Feel me . . .

   Identifying the expressed needs of the site and planning training visits to meet those needs is crucial to ensuring cooperation of the hosts. This requires acting with respect and consideration for the differences, values, preferences, and expressed needs of the trainees in performing all professional activities. Cultural competence is as important, if not more important than technical competence. The CMC “champion,” who was identified by John Macdonald, MD and Harriet Loehne, DPT during their site visit, expressed that lymphedema management training was a primary need, which subsequently became the focus of our project.    Differentiating between a lack of knowledge and a lack of resources is also critical to the sustainability of training efforts and the ultimate success of the project. When lack of resources and good intentions are combined, serious problems are often created in developing countries.³ For example, consider that the faculty providing the major portion of our lymphedema training at the primary level consisted of Steve Norton, Director of the Norton School of Lymphatic Therapy, and Nicole Gergich, MPT both of whom are nationally/internationally recognized trainers. Despite such excellent training, follow-up reports from CMC demonstrated that a lack of resources has prevented successful implementation of the training. Such resources include the high cost and limited domestic availability of short-stretch bandages and compression garments, as well as the time and labor-intensive nature of these methods. However, if the training had been tailored to include local products, and techniques had been modified to take advantage of the resources available, the results of our training would likely have been as successful as those reported by Narahari and Ryan.⁴ Future visits will implement modified procedures.    This lesson was a hard one to learn. Prior to the trip, we did not have a complete formulary for all of the bandaging materials available at the site. We subsequently found products in other departments that could have easily been used for compression—eg, the ubiquitous crepe bandage, closed cell and latex foam, tubi-grip and surgi-grip, cast padding. Regardless of how attractive donated materials may seem, future volunteers will need to consider low-cost alternatives to modern wound dressings since many are not sustainable in developing countries.    The success of the second component of our training project for mid-level community health officers and informal caregivers is a case in point for the importance of the resource issue. This training required minimal resources and used the WHO community-based approach in conjunction with self-care groups. The minimal resources included clean water, soap, a washbasin, and some clean rags. As we soon learned, even these were not easy for some to obtain.

Touch me . . .

   We had been informed that in India, physicians were not customarily trained with nurses and other allied-health practitioners. We insisted on providing multidisciplinary, co-educational training to ensure that the trainees would be competent in hands-on techniques for all patients. Male and female clinicians were separated during these sessions, but the males practiced on the female faculty and vice versa. It was obvious that a new paradigm had been introduced! This was possible because their sincere desire to learn the skills overcame their customs and cultural biases. Therapeutic touch is a privilege and a powerful tool for communicating care. By the second day, the group had recovered from their initial reserve and was enthusiastically massaging and wrapping as needed. In the community-based training, the team washed the legs and feet of the participants to demonstrate proper hygiene techniques. This act demonstrated our caring and willingness to help, relieved any hesitancy on the part of our hosts, and facilitated cooperation and understanding.    We were also touched by our experiences in ways we did not expect. During the experience, one Chatham student perhaps felt the most significant impact:     “I developed many skills and insights during our visit to India,” noted Chatham DPT student, Adam Stadtlander. “There was one experience that sticks out more than any other. A patient was approximately 60-years-old and had lymphedema in her lower extremity. She lived with her son and his wife and the couple’s 7 children. The entire family lived in a room roughly 8 x 8 feet, connected to a small room where they prepared their food. The couple and their children all slept on one bed and the grandmother, our patient, slept on the floor in the entryway of the apartment. The apartment was made of concrete and had only a door and one small window. They had no private bath and had to walk ¼ mile to get clean water. The grandmother didn’t have enough money to buy soap to wash her legs and had no place to lie and elevate her leg—what we perceived to be the simplest interventions were very difficult for her. Seeing the conditions that this family endured was a very intense example of the disparity not only present in India, but throughout the world.     I hope to continue the work we started in India. The most meaningful part of the trip was educating the community health officers. I think the next step for me is to seek a way of becoming more involved in training the trainers and assisting them in the development of their teaching skills. This would create a self-sustaining education system, which I believe is the most empowering way to contribute to the LF elimination campaign.”

Heal me . . .

   By sharing our knowledge and skills with other professionals in developing countries, we gain as much as we give. In the year since our training at CMC, our champion, Dr. Ashish Gupta, has initiated numerous wound and lymphedema workshops for other physicians and medical personnel. The training is having an impact on the patients from CMC and the surrounding medical communities. The HVO-AAWC wound and lymphedema program steering committee has developed a curriculum to track training efforts at all sites and implemented a tool to assess specific site needs. We are in the process of creating a standardized introductory training program to lay a foundation that volunteers can build upon. Linking this initial project to WHO efforts eventually led to the development of the WHO working group on wound and lymphedema management in resource-poor settings. Our continuing work with WHO will be highlighted at a later time, but you must believe that your time and efforts are going to make even more of a difference than ever before. I hope you will consider being a part of this extraordinary effort. When people ask me how my life was transformed by the experience and what motivates me to continue the work despite my already hectic teaching and research schedule, I have to admit it is because of the intense feeling of being connected to the universal web of life—I call it spiritual healing.