FROM FOREIGN RESEARCHER

 

Mary Elinor Boyle(Department of Music State University of New York)
 "The Science of Human Services"


 The creation of a new discipline, "The Science of Human Services," at Ritsumeikan University has profound implications for the improvement of quality-of-life of the individual and of society. An integrative approach to professional and community collaboration through shared scientific strategies addresses the need that is evident from the global search for effective treatment in the development of alternative and complementary health care practices.

 Typically, human services are known in the plural, as a widely ranging group of varied disciplines or professions focusing on single domains, e.g., speech pathologists - speech, physical therapists - physical rehabilitation, educators - education, social workers - counseling, and direct care workers - direct care. Because these professionals often do not share educational training, they see their roles in highly differentiated ways rather than as members of teams with common goals and objectives for clients, their families and communities. This integrative program at Ritsumeikan University addresses the chasms created by differentiation among the professions involved in human services. Many of the concerns of clients involve perceived lack of care related to quality in the lives of themselves, their families, and their communities.

 As I considered my commentary, I remembered an agonizing encounter during a trial testing an operant sensory awareness assessment instrument for patients in vegetative states. The procedure was designed to determine whether subjects with profound diffuse brain injury could solve a simple problem if it were presented with no verbal directions. The patient was a 58-y-o Caucasian female whom all care givers had told me was non-responsive to external stimuli. During the baseline condition, a 15-sec period of silence followed a press or release of the pillow switch, no electronic devices were activated. On the third day of the experiment, the patient activated a comedy show for almost the whole 10-minute period. Whenever the show went off after 15-sec, she would move the pillow switch. I was delighted that she was actively controlling the comedy show. Then, she started laughing appropriately. When her husband heard her laughing, he rushed into the room and began screaming at me, "You told me she was a vegetable! Why is she laughing at the show and not communicating with me? I love her!" By this time, the nurses were running into the room and attempting to remove him. He was rooted to the ground and would not leave the room. He turned sobbing to his wife and said, "I love you. I have been here everyday for three years. Don't you love me enough to laugh at me?" At that point, he walked out of the room. As the nurses attempted to calm the patient, I followed her husband. My attempts to explain to him that we did not know that his wife could respond to a nonverbal self-initiated procedure with a feedback loop did not assuage his pain. Within ten days, his wife died.

 The incident, which was traumatic, points to the need for research on "care" and "care-giving" focused not only on a single patient, but the family unit and community services. The patient's spouse did not find within his community any resources to address his personal pain. He went to work, the nursing facility, and home each day, as there are only 24 hours in a day. The diagnosis of "vegetative state," meant to him that his wife was considered a vegetable. The idea that the physicians were supporting a researcher who was investigating this, meant to him that they knew something that they had not told him.

 The needs for the scientific analysis of "care" and "care-giving" and for the development of model programs based upon these analyses are particularly important now as the demographics of populations in developed countries, such as Japan and the United States, shift median age ranges. In many cases, care which was previously provided by professionals in nursing and related areas, is changing to a consultant model in which the nurse educates a family member or significant other to provide a health service. As family members and others offer new services to individuals, the research community needs to examine effective care-giving practices and what support services are necessary to maintain effective care of the client and the well-being of the care-giver. This becomes especially critical in areas where the individual becomes progressively less able to make decisions about his or her well-being and may be unable to acknowledge this state. Care-givers themselves may experience fluctuating states of decision-making ability due to the stress of multiple environmental changes.

 Past research in human services primarily has examined the effectiveness of a given treatment(s). The challenge we now face is one of the development of effective treatments and treatment systems which focus on "care" of individuals within the family or the community units. The scientific investigation of care, care-giving practices and quality of life of individuals and their families will promote the strength of the person as an individual and his/her relationships with family and community. The Human Research Services Center of Ritsumeikan University is at the forefront of this critical collaborative endeavor involving professionals working in and with communities. Your leadership will create and demonstrate new relationships in the Science of Human Services. Your work will promote quality in the lives of individuals, family members, professionals and our communities. Thank you!