Carol Smith and her research team have addressed this very important question of caregiving effectiveness with technologically dependent adults at home. Dr Smith’s goal was to develop a model of caregiving effectiveness that identifies factors that influence outcomes in order to guide population-based community nursing practice and support family caregiving for these patients. The outcomes were three research based study publications with the model evolving to a mid-range theory that is not only patient focused, but also includes quality of life indictors for the caregiver.
In testing the caregiving effectiveness theory the team has done research with patients dependent on ventilators at home and with families managing home parenteral nutrition. As a result of these studies Dr. Smith has presented data to the National Academy of Science on Safety of Home Technical Care and this report became the basis for FDA rules/regulations for improvement in home mechanical equipment safety and human factors features, as well as education for laymen’s use in the home. The results of this work have also been reported to the Health Care Financing Administration on protecting the most vulnerable from Medicaid/HMO-managed care shortfalls. And she has developed and verified several interven tions and been called upon by Carnegie Mellon University as a consultant for their Nurse robot named "Flo".
Each technology that ends up in home care has different patient complications to assess, different ways to manage the home care and requires different interventions and expertise. In addition, each family situation is different in terms of resources and relationships. There are, however, major themes that appear to consistently predict more positive outcomes. The factors that Dr. Smith and her team have identified that are important to positive outcomes include the relationship between caregivers and patients, caregiver preparedness to manage home care, efficient management of resources, and caregiver characteristics such as levels of fatigue/sleepiness or depression. The outcomes of the model are patient and caregiver quality of life, the physical condition of the patient and the side effects of the technology. The caregiver effectiveness model, while complex is an excellent example of how a theoretical application of an empirically based model can focus interventions to improve outcomes.
Three examples of population-focused interventions for technologically dependent adults provide support to the usefulness of this model of caregiver effectiveness. The first is the development of an infection prevention intervention for use with patients on total parenteral nutrition that focused primarily on teaching aseptic technique and good hand washing procedures. Results demonstrated a lowering of catheter-related infections and reduced hospitalizations. This intervention is now in a self-guided format kit and is used by the Oley Foundation, a national patient/family advocacy group. The Handwashing Video was presented the Aurora Instructional Award and in independent evaluation was shown to decrease nurse provided teaching time and the length of hospital stay. The self-guided kit has also been adopted for use by the Kansas State Health Department for use in schools, public services and restaurants and has been translated into numerous languages and used by medical missions in six countries to teach hand washing techniques. It is amazing with the general recognition of the effectiveness of good hand washing, that it took a home-based intervention for parenteral nutrition patients to establish an effective and easy-to-use intervention for use in the public service domain.
A second, and creative intervention tested by this group of investigators was a method for combating reactive depression. The intervention consists of a video tape illustrating the common negative emotions and methods to manage these emotions and the use of a self-monitoring depression diary which appears to be therapeutic in combating depression in the caregivers. The materials for the depression prevention have been published in Mosby’s Home Teaching Guides (1999) and in journals for other chronically ill patients and their families.
Dr. Smith and her team are now involved in testing the usefulness of using in-home telehealth and internet-based systems for education of caregivers and patients, and for providing peer and professional support for home care. Both telehealth and internet access hold great promise for families in rural and hard to reach populations thorough-out the country. Families have highly evaluated the internet problem solving algorithms and support systems (email contact to others) for managing everyday technology home care problems provided for them on-line in these studies. The team's web site for their current study recently was awarded the Sigma Theta Tau Pinnacle Award for computer based patient education.
Adding another type of technology (computers) for use by these families is a barrier to overcome, but it opens avenues for interventions never available to families before. If such technology is effective, it will be more cost beneficial than home visits and certainly more frequent in terms of contacts and oversight. Tele-health and "Virtual Nursing Care" via the internet would not only result in reduced costs for both patients and insurers but also help address the looming nursing shortage. Cost data Dr Smith is currently collecting will lead to cost-effectiveness research on outcomes from "virtual" nursing expertise.
This program of research focused on home care of technologically dependent adults is opening new horizons on nursing interventions for family education products and patient and family support systems that are applicable to a wide variety of populations well beyond the technologically dependent home care patients and families.
The spin offs of Dr. Smith’s data/testimony have been used/cited by the National Academy of Sciences in their report to FDA; by NIH Child & Rehabilitation Institute director in an article in Neurorehabilitation titled "Economic disadvantages of Ventilator Medicare/Medicaid Support"; by the Kansas State Health and Environment Department for their statewide hand washing campaign to reduce infection in public arenas; and used to pass house bill KSHB2707 for home telehealth in Kansas. Dr Smith’s Patient Education web site was given the STT International Award for Dissemination of Practical research in 20005; the STT Award for Computer based Public Education in 2002 and was selected for presentation to the Kansas state Legislative Committee on Informatics budget hearings; and Smith was named by PEW Foundation to their consultant panel developing their national research agenda for Health On the Internet: Caregiver Research Priorities Report. Dr. Smith publishes data based science articles, nursing practice home care protocols for clinical journals and briefs in laymen magazines for patients and their families. Thus, Dr Smith’s work has informed public policy. And finally other researchers have used Dr. Smith’s caregiving theory to guide their research and earned awards for their dissertations, published their results and applied the theory to other complex home care populations.
References:
Smith, CE, Giefer, C.K., & Bieker, L. (1991). Technological dependency: a preliminary model and pilot of home total potential nutrition. Journal of Community Health Nursing, 8(4), 245-254.
Smith, CE (1994). A model of care giving effectiveness for technologically dependent adults. Advances in Nursing Science, 17(2), 27-40.
Smith, C.E., (1999). Caregiving effectiveness in families managing complex technology at home: Replication of a model. Nursing Research, 48(3), 120-128.
Smith, CE, Pace, K., Kochinda, C., Klein beck, SVM., Koehler, J., Popkess-Vawter, S. (2002) "Caregiving Effectiveness Model Evolution To Midrange Theory of Home Care: A Process for Critique and Replication," Advances in Nursing Science, 25(1), 51-65.
Smith, CE, Mintz, S., & Caplan, A. (1996). RL Klatzky, N Kober, & A Mavor, (Eds.), Improving the usability of home medical devices. Report of National Academy of Science to U.S. Congress. Washington DC: National Academy Press, 5-8.
Smith, C.E., Cha, J., et al. (2002). Feasibility of In-Home Telehealth for Conducting Research. Clinical Nursing Research. 12 (2), 220-32.
Smith, CE., Cha, J., MaGee, J., Bingham, J., & Van Gorp, M. (2002 ).Quality Assurance Processes for Designing Patient Education Web Sites, Computers in Nursing 20, 5;191-200
Koehler, J.A., Cha, J., & Smith, C.E. (2001). Caregiving and aging: A Model for using nursing interventions to meet the challenges of community health needs. Home Health Care Management & Practice, 14(2): 129-137.
Smith, C.E. (2001). Technology Home Care: Report for NINR Informal Caregiving with Home TPN, Ventilators published in Stuart, M. & Weinrich, M. Protecting the Most Vulnerable: Home Mechanical Ventilation Report form NIH Neurorehabilitation and Neural Repair: (15) 159-166.
Smith, C. E., Curtas, S., Werkowitch, M., Kleinbeck, S.V.M., & Howard, L. Home parenternal nutrition: Does affiliation with a national support and educational organization improve patient outcomes? JPEN 26(3), 159-163.
Smith, C.E., Curtas, S., Kleinbeck, S.V.M., Werkowitch, M., Mosier, M., Seidner, D.L., & Steiger, E. (2003). Clinical trial of interactive and videotaped educational interventions to reduce catheter-related infection, reactive depression, and rehospitalizations for sepsis in patients receiving home parenteral nutrition. JPEN 27 (2), 135-14.
Smith, C.E., Rebeck, S.L., Werkowitch, M., Thompson, NC, & Holcroft, C (2000). Journal writing a complimentary therapy for reactive depression. Nursing Rehabilitation Research, 25(5), 170-176.
Smith, C.E., Leenerts, M., & Gyski, B. (2003). A systematically tested intervention to manage a common adverse symptom: Reactive depression. Nursing Research. 52 (6), 401-409.