The Office of Technology Assessment, in a 1987 memorandum to the U.S. Congress, described a technology-dependent person as one who needs both ongoing nursing care and a medical device to compensate for loss of a vital body function.Home care technologies include mechanical ventilation; apnea detection monitoring; oxygen assist; continuous positive airway pressure (CPAP); nutrition or hydration via central venous infusion; hemodialysis and peritoneal dialysis’ spinal infusion for pain; infusion for chemotherapy, insulin, or antibiotics; automatic internal defibrillation; and other systems that avert death or further disability. With home care technology a family member provides nursing care, makes complex decisions, and learns skills in managing machines without inadvertently causing harm. Studies verify the additive length, quality of life, and cost-effective outcomes from use of various home care technologies (Smith, O. E., 1995).
A common requirement for placing complex technological equipment in the home is that a competent and willing caregiver is available to manage the equipment before treatment (such as home parenteral nutrition therapy) will be authorized (Ireton-Jones, 1998; Steiger & Ireton-Jones, 2001). Problems to be studied included the impact on family caregiver quality of life (Smith, C. E., 1994), ethical decision making in use of technologies, costs of safety regulations for manufacturers, and quality control measures for home care. Technology caregiving resembles a miniature, urgent care center where families provide complex, direct patient care, maintain equipment and supply inventories, obtain needed home services, negotiate for reimbursement, and manage caregiver problems (Cohen, 2003; Noddings, 1994). Nursing research has contributed to study findings inseveral areas. C. E. Smith (1995, 1996) has a series of studies on families, caregivers, and patients dependent on technology for lifelong survival (Smith et al., 2002). The ethical issues in technological home care were summarized and research questions posed in a Hastings Center report (Arras, 1995). Family members reported being ill-prepared for technology caregiving (McNeal, 2000; Scott, L.O., 2001) and little has been done to support caregivers with their long-term daily technology care (Gorski, 1995).
Research with home care technologies should be systems-oriented on a variety of levels: machine reliability and safety, compensated physiological systems, family care giving, community support, health care providers, and third-party payers’ reimbursement. The most extensive research has been at the machine level, where manufacturers’ studies of the mechanical system has led to Food and Drug Administration’s (FDA) approval for clinical trials conducted by nurses. Government regulation also has called for research on the manuals accompanying devices to determine readability and effectiveness of instructions for laypersons. In 1996, the National Academy of Science presented a report to Congress from manufacturers, regulators, health professionals, families, and patients regarding findings from research on safety and issues of home technologies and family care. Problems to be studied included the impact of family caregiver quality of life (Smith, 1996), ethical decision making in use of technologies, costs of safety regulations for manufacturers, and quality control measurers for home care.
Major conclusions from research are that home care technologies enhance and extend quality of life for those who would otherwise succumb to illness, frailty, or disability. Further, family members are very capable and desirous of home care for their technology dependent loved one. Direct physical care and indirect costs (reduced income, innumerable expenses, and transportation fees) are shifted to the family (Gaskamp, 2004) and evidence of emotional and physical strain occurs in family caregivers. Delivery of technology services in home care is costly and uncoordinated, although cost-savings and quality improvements occurred when models of comprehensive care were followed. In some communities and states and in some populations of patients (e.g., ventilator-dependent), coordinated services do exist (Naylor et al., 2004).
Future directions for research include the need for continued study of informatics that can support safe, optimal technology care. A variation of the word ‘technology’ is technogenesis, which is used in educational technology where health care students, practitioners, and faculty nurture new technologies while preserving safety equipment. For instance, Healthy People 2010 goals for supporting those persons requiring restorative technology devices (ANA, 2002) and the Library of Medicine Quality Chasm report have a goal for safe use of infusion pumps. Effective interventions (such as step-by-step algorithms, video scene illustrations of equipment assembly, use, cleaning, and trouble shooting) delivered over modern informatics technology will achieve the Picker Institutes’ 1998 Health Care Quality Improvement goal from the patient’s perspective of “establishing access to information to overcome the discontinuity between inpatient and home care setting” (Picker Institutes, 2005). Effectiveness of the informatics interventions themselves and the technology devices must be tested.
Study of interventions for technology home care in culturally diverse populations is still needed (Smith, 1994). In addition, policy, ethical, professional, and interdisciplinary areas of authority issues should be studied to reduce duplication and enhance resource availability. Predicting cost and outcomes of care should be compared to patients’ and families’ desired quality of life. Consumer demand and technological advances will continue, one hopes, with nursing research verifying theoretical frameworks that guide effective home technology.