Use of the Internet in survey research.

An Internet survey of the Pick's Disease Network showed the potential for use of the Internet for research into diseases that are too rare to find sufficient subjects to gather data on patient and family experiences, helpful interventions, and other care-related information. This descriptive survey used an author-constructed instrument posted on a university server to collect information on both the affected persons and the family. Although the sample cannot be scientific and controlled, there was a 68.6 per cent response rate. The fact that specialists and imaging technology had been used in making the diagnoses, and that, with one exception, the responses were comparable to information in other reports, increased, confidence in the validity of the sample and the responses. One of the biggest needs of caregivers and family members was for more information and support. This survey indicates that such research can provide information about rare diseases so that nurses can be more helpful to patients and caregivers. Further exploration of research uses of the Internet could not only help to get information on rare diseases, but perhaps offer unique research opportunities to students who are using distance-education technologies. J Prof Nurs 17:187-193, 2001.

Frontotemporal dementia: a different kind of dementia.

Frontotemporal dementia (FTD) is an umbrella term for a number of uncommon illnesses, including Pick's disease, which affect the frontal and/or temporal lobes of the brain and produce a dementia syndrome that is quite characteristic but unfamiliar to most clinicians. It is the third most common cause of cortical dementia. An overview of clinical manifestations, diagnosis, and management of FTD is provided with some specific information in relation to Pick's disease and a case example. Caregivers, in particular, need the education and support that could be provided by informed nurses.

Ethics and research priorities in academic administration.

Deans and directors of nursing education programs have primary responsibility for budgets even though different programs vary in the advising and recommending power given to committees. With research needing greater emphasis, especially in schools with graduate programs, and budgets at all levels facing minimal increases or cutbacks, nursing deans are faced with difficult decisions in securing and allocating monies for research. Many faculty view decisions and allocations only at the micro level of who gets money for what and do not consider these decisions from the perspective of how they are influenced by such macro-level considerations as restructuring of health care, the downsizing of educational programs, and the strategic plans of their own institution and granting agencies. In this article an attempt was made to consider both the macro and micro levels and to select from several ethical theories such principles as caring, utility, justice, and faithfulness to illustrate how the decisions can be guided by ethical principles. Ethics of caring can be seen as a guide in research development. Utility is about the only justification for downsizing and restructuring. The expectations of higher administration, faculty, students, and alumni may create dilemmas in regard to faithfulness. Distributive justice provides guidance for the distribution of scarce resources.

Consortia arrangements and educational telecommunication.

Revolutionary and rapid changes are required in nursing programs and products to fit with the developing health care system. Many present-day nurses and nursing faculty will require changes in their areas of expertise. Nursing colleges that have faculty qualified in the areas of greatest need should explore the use of consortia for delivering distance education. In this way, quality can be controlled, and the conflict of interest involved in schools trying to change the preparation of their own faculty can be reduced or resolved. Organizing consortia is complex, with problem areas in administration, personnel, and resources. Selected television satellite networks are offered as examples of how to manage the problem areas or as possible vehicles for course delivery.

Telecommunications and nursing education.

Telecommunications are becoming increasingly important to nursing educators. At the University of Nebraska Medical Center College of Nursing, communication by two-way television, computers, facsimile machines, and telephone conferences is essential to the administration and operation of a school with four divisions located across 500 miles. Two-way television is available through one system that uses satellite and fiberoptic technology and another that uses telephone lines. The four campuses of the college share classes, administrative meetings, and conferences through television. Faculty members teaching via TV are oriented to designing instructional material for transmission and to the minor quirks of the technology. Students in TV classes must be aware of their responsibility for active involvement in learning. Studies have found no significant differences in the grades of students in "live" classrooms and those in TV classrooms, but both faculty and students prefer the face-to-face situation. The College of Nursing uses computers extensively on an internal network linking the four campuses for E-mail, file transfer, computer-assisted instruction, and administrative information sharing. Another computer network, Synapse Health Resources Online, links the college and the Medical Center with health professionals in rural areas throughout the state.

Availability and utilization of services by Alzheimer's disease caregivers.

1. Studies show that a high percentage of family caregivers of persons with Alzheimer's disease either do not use support services or are unaware of their availability. 2. Family caregivers in rural areas use proportionately more services than caregivers in urban areas. 3. Nursing will be an integral part in improving the quality of care and living for persons with Alzheimer's disease.

Alzheimer's disease. Special care units in long-term care facilities.

Special units in long-term care facilities have been developed to respond to the needs of residents with Alzheimer's disease. The underlying assumption is that specific environmental and programmatic modifications will enhance the quality of life for Alzheimer's patient's. Descriptive accounts of special care units for Alzheimer's disease reveal wide variations in philosophies, therapeutic approaches, protocols for behavioral management, staff education, and environmental design. Facilities with special care units used fewer chemical and physical restraints, reported a decrease in the number of problem behaviors, and indicated that environmental changes provided a personal sense of freedom and dignity. Nurses should be aware of the potential benefits of special units and advocate for their use if behavioral problems are severe enough to require the use of chemical or physical restraints.

The Adolescent Life Change Event Scale: its development and use.

A variety of instruments have been used by researchers from several disciplines to assess life change events in adolescents. Most instruments have not been tested for validity and reliability, and have been used in one-time studies, with limited effort to synthesize all studies using the particular instrument. Because of the number of requests, over more than a decade, to use the Adolescent Life Change Event Questionnaire, the authors have attempted to review all known studies using this instrument as a preliminary step toward further testing of the questionnaire for validity and reliability. Twenty-five studies, involving a total of 4,024 adolescent subjects from nine states, were reviewed. Findings included gender and age differences in number of events experienced and the perceived stressfulness, and a relationship between events experienced and suicidal ideation. Recommendations are made regarding future development and use of the instrument.

Moving day: relocation and anxiety in institutionalized elderly.

Environmental changes to, between, or within institutional settings create stress and risk for illness or death in the elderly population. Persons who are given individualized preparation and as many choices as possible in relation to a move show fewer deleterious effects than those involved in involuntary relocations. Elderly persons moving to a more dependent living arrangement show more anxiety than those moving to a more independent arrangement. Comprehensive information should be provided to the personnel of the new facility, specifically about the older person's fears and losses.

An exploratory study of life-change events, social support and pregnancy decisions in adolescents.

This exploratory, descriptive study investigated the relationship of life-change events and family and social support to decision making in pregnant adolescents. The convenience sample consisted of 43 subjects aged 14 to 18 years coming to two midwestern clinics for pregnancy testing. Instruments were the Adolescent Life Change Event Questionnaire and the Demographic and Social Support Questionnaire. Data analysis involved three groups: continue the pregnancy (N = 30); abort (N = 9); and undecided (N = 4). Kruskal-Wallis one-way analysis of variance by ranks was used to test for differences between groups on overall life-change unit (LCU) scores and social support scores. Chi square, Fisher Exact Tests and step method multiple discriminant analysis were used to determine if specific life changes were more associated with particular outcome decisions. While not statistically significant, the overall LCU scores were higher and the social support scores lower for the continue group than for the abortion group. Subjects in the abortion group were younger, more likely to have experienced "getting grounded," and more involved in school and social activities. More subjects in the continue group reported personal and family health problems.

PIP: This exploratoy study investigats the relationship of life-change events and family and social support to decision making in pregnant adolescents. The convenience sample consisted of 43 subjects aged 14 to 18 years coming to 2 midwestern, urban American clinics for pregnancy testing. Instruments were the Adolescent Life Change Event Questionnaire and the Demographic and Social Support Questionnaire. Data analysis involved 3 groups: continue the pregnancy (N=30); abort (N=9); and undecided (N=4). Kurskal-Wallis 1-way analysis of variance by ranks was us%ed to test for differences between groups on overall life-change unit (LUC) scores ans social support scores. Chi-square, Fisher Exact Tests and step method multiple discriminant analysis were used to determine if specific life changes were more associated with particular outcome decisions. While not statistically significant, the overall LCU scores were higher and the social support scores lower for the continue group than for abortion group. Subjects in the abortion group were younger, were more likely to have experienced getting grounded, and more involved in school and social activities. More subjects in the continue group reported personal and family health problems.

The development of an adolescent life change event scale.

A questionnaire listing 31 personal, social and family changes believed stressful to adolescents was administered to 207 subjects aged eleven to eighteen. They were asked to rate the items on a scale of one to five to indicate how "upsetting" they believed the event was. They were also asked to indicate how many of the events they had actually experienced. The Adolescent Life Change Event Scale developed from this data is shown. It is recommended that the questionnaire be given to a much larger sample of adolescents from other socioeconomic, racial and cultural backgrounds before the final weightings are assigned to the scale. Once this has been done, the scale can be used to study relationships between life stress events and illness or other manifestations of stress in adolescents.