Nursing research in home health care: Endangered species?

Nursing Research in Home Health Care: Endangered Species? Mary Ann Anderson, PhD, RN, Elizabeth A. Madigan, PhD, RN, and Lelia B. Helms, PhD, JD

Abstract An information revolution is occurring in home health care documentation processes and systems. The federally mandated Outcomes and Assessment Information Set (OASIS) for patient assessment and the use of electronic patient medical records will significantly affect the conduct of nursing research in home health care. The purposes of this article are to inform potential home care nurse researchers about the standardization of patient information as exemplified by OASIS and electronic patient medical records and recommend strategies to accommodate these changes. The potential for meaningful, scholarly studies in home care has never been greater, but researchers must address new challenges and adapt investigations accordingly. 200 ■ Home Care Provider

ome health care is one of our favorite places. As researchers and educators, we appreciate that home care agencies have welcomed, assisted, supported, and cheered us. Home health care has been a highly recommended field for novice nurse researchers.1 We have profound respect for home care nurses’ unique independence of spirit and professionalism. The practice setting, the patient’s home, requires critical and often ingenious thinking, resulting in a kind of nursing practice autonomy rarely duplicated. Home care nurses are mostly on their own to assess, diagnose, implement, and evaluate patient care, thriving on the challenges of freedom to deliver care and practice nursing as they see fit, secure in the belief that they do make a difference. Often such activities were not measurable or tangible, yet anecdotal evidence supported the importance of such work to clients and families.1 Recent changes are transforming these dynamics and the organizational climate of home health agencies (HHAs). Foremost among these changes are new standardized forms for home care documentation: the mandatory use of the Outcomes and Assessment Information Set (OASIS) instrument for patient assessment2 and the introduction of standardized electronic patient medical records. Both are expected to significantly affect HHAs, future nursing practice, and the conduct of nursing research in home health care. In this article, we seek to call attention to the latter—nursing research—and the issues raised by standardized information technologies that will challenge nursing research using patient records in home care. We suspect the changing information environment will make some home care nurse researchers an endangered species.

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Standardized Patient Information Nurses, like most health care providers, find themselves in the midst of an information revolution. Nurses are developing standardized languages, care maps, and numerous other information formats to streamline and simplify data about patients, their needs, and their care. All such strategies transform “rich” into “lean” information: the former is both highly descriptive and variable, such as what occurs in faceto-face interactions, and the latter uses a common, simplified terminology to standardize information and limit variability. Most often, lean information is in written or electronic format using checklists, scales, and simple forms with minimal space for descriptive comments.3 Most approaches to standardization in nursing documentation seek to reduce rich and highly idiosyncratic information about patients into lean formats for the dual reasons of ensuring completeness and efficiency and minimizing potential misunderstandings. Ironically, information technologies for transferring and storing information about patients in lean forms introduce a further bias toward gathering more information at more collection points in an episode of care.4,5

Overlooked in these developments have been the implications for nursing researchers interested in describing the rich variety of patients and the strategies for managing patient care. As handwritten documentation is replaced by standardized assessments, such as OASIS, and lean data formats compatible with electronic recordkeeping, rich sources of information about patients and the dynamics of nursing practice in home care settings are being lost to nurse researchers. OASIS and Nursing Research OASIS was developed to standardize assessment of patient data and provide a venue to evaluate outcomes of home health care services.2 Shaughnessy and colleagues from the University of Colorado Center for Health Policy developed the OASIS in consultation with expert clinicians and researchers and in pilot studies within HHAs. Data are collected at home care admission and discharge and when significant changes arise in condition, death, or transfer to another health care setting (hospital, hospice, or nursing facility). OASIS is designed for use only with adult, nonobstetric patients. HHAs transmit data on each patient to a central repository within their state, often the state health department, which then sends the information to a central site at the Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration). Agencies also have the option of sending their data to a commercial third party that returns agency-specific outcomes compared with other agencies in their state of similar type (eg, hospital-based or freestanding). Initiated on October 1, 2000, OASIS serves as case mix adjuster for the prospective payment system (PPS) for Medicare home care. Agencies receive payment under PPS for an episode of care; specific OASIS items are used to adjust reimbursement for that episode of care based on a projection of how patient needs are expected to affect the amount of home care service a patient requires. For hospitals, the PPS is tied to the diagnosis of the patient (ie, diagnosis related groups). In home care, the PPS is linked to the results of OASIS-generated data, not diagnoses. The PPS is a significant change in home health care, which previously was reimbursed on a fee-for-service basis. OASIS includes 80 items categorized into clinical, functional, environmental, caregiver, and service utilization dimensions. Most items are accompanied by an ordinal rating scale ranking the patient’s status at the time of assessment. The data are intended to be integrated into the admission assessment, not added to an existing assessment form. Nurses or therapists collecting OASIS data may directly observe patient abilities or use patient self-reports. However, information collected on the OASIS is lean, with little space for elaboration or source identification. The federal mandate to use OASIS standardizes HHA recordkeeping. Thus, the kind of home health care patient December 2001 ■ 201

data that may be retrieved and audited for research purposes is constrained by these parameters. Researchers need to address such constraints and incorporate the new limitations in future studies. In some instances, the OASIS format may facilitate quantitative investigations if the researcher is satisfied with the operational definitions of the variables. For example, the OASIS entry for pressure ulcers uses a four-item ordinal scale that specifies the dermal and tissue depth of the pressure sore. The same item specifies the number of pressure sores at each stage. Future researchers may be confident that if the data they are seeking are captured by OASIS, that data will be on the patient’s home care record because an agency’s OASIS data are tied to reimbursement for that patient. Missing OASIS data interfere with the agency’s cashflow because cases are not processed for payment without complete OASIS data. Additionally, for researchers interested in home care financial data, the home health resource group score calculated for each patient after the OASIS assessment yields important information. Researchers will be able to compare home care resource utilization among patient groups, agencies, or geographic regions.6 OASIS data can be easily used to evaluate patient outcomes. The data are collected using the same forms at the same times during home care episodes—always at admission and discharge. In the past, home care discharge summaries varied from nurse to nurse, nurse to therapist, and organization to organization, so getting a sense of patient progress or lack thereof was difficult. Now agencies are not required to do any kind of reliability testing, particularly interrater reliability, on OASIS data. Because of payer concern about “upcoding” for increased financial remuneration, some type of mandate imposing verification procedures may be anticipated soon. OASIS was not designed as a research instrument, nor has it been subjected to extensive psychometric evaluation. Preliminary work7 suggests the depressive and behavioral items may not be highly internally consistent and may not capture one conceptual domain. Conversely, the functional status items have been found to be internally consistent measures of one domain. Further research on OASIS reliability and validity is important so researchers can evaluate how best to use the items. Simply using them in the current format may confound or bias research results in unexpected ways. If data collected through the OASIS do not reflect the researchers’ intention or the research variables’ operational definitions, alternative types of variable measurement may be problematic. OASIS narrows the scope and forms of information gathered about patients and clinician care in agencies. For example, the item for depressive mood does not capture the somatic symptoms of depression, such as difficulty sleeping and appetite changes. 202 ■ Home Care Provider

Furthermore, a researcher seeking data that are not part of the OASIS format will have to incorporate mechanisms that generate such information into the research design. Planning will have to be done early in the project and in conjunction with home care personnel so that all parties are aware of and agree to an additional data collection burden. Additionally, the advent of OASIS has been an incentive for many HHAs to streamline their documentation systems. Content that traditionally has been a part of the home care record now may be transformed or altogether absent. In short, home care recordkeeping is in flux. Electronic Records and Nursing Research Patient information increasingly is kept in electronic forms. The benefits of efficiency, consistency, and easy retrieval are undisputed, yet they have some drawbacks from the perspective of nursing researchers interested in the dynamics of patient care in home health settings. Electronic recordkeeping transforms patient information previously kept in rich forms (eg, bulging, handwritten home care patient records) into lean formats. Computerized charting in conjunction with standardized nursing language has altered the documented picture of the nurse/patient interaction. By definition, the process of categorizing inhibits rich description and individualization. From a seasoned home care nurse researcher’s perspective, “mass-produced” documentation in lean format has limitations. Certainly, patient records are easier to read, better organized, and contain essential information on the patient and the care delivered. More information likely is delivered when electronic records are used to communicate patient data.5 However, more data are not necessarily better data because no linkage either to more efficient or effective practice or delivery of care has been established.4 Home care nurses appear to be comfortable in exercising their professional skills in evaluating and responding to patient needs even when data are missing in referral information.8 Electronic patient records do not provide much of the detail and richness in an episode of care. Lost, too, are descriptions of patient idiosyncrasies and the complexity of nursing judgment and action. Phrases used in the electronic documentation of nursing care are selected from a menu in the software program, and although the verbiage is correct and the type legible, the documentation gives little information as to the depth and realities of the patient/family situation and the challenges of nursing care delivery. In auditing such patient records, the content is monotonous and dull; patients all sound the same. Home care records no longer are rich sources of descriptive information about patients’ experiences or care dynamics. Nurse researchers will have to find other sources of anecdotal evidence to clarify and amplify research problems or findings.

Home care nurses report informally an appreciation for the ease of charting in electronic formats, especially when recording OASIS data. They also confirm the general efficiency of electronic documentation.Yet home care nurses admit that, when situations arise that require free documentation, their composition skills have become rusty. One clinician said that, after using electronic charting for several years, she had trouble putting her observations and assessments into sentences and paragraphs. Another home care nurse likened the situation to using hand-held calculators and the questionable trustworthiness of math skills after one has become dependent on this gadget. As with OASIS, electronic home care records will constrain information important to many types of qualitative research approaches. Lean formats make content analyses and the search for unique issues and themes problematic. For example, in a recent study using a mixed research design (quantitative and qualitative), investigators used the Nursing Intervention Classification standardized language taxonomy9 as an organizing framework to describe nurses’ activities in the initial home visit to moms and babies who had been discharged 24 hours after birth. Selected home care records for such visits were reviewed, and the nurses’ interventions were tallied. The audit involved a systematic review not only of the “flow sheet” of care delivered but also the visiting nurses’ written documentation. The anecdotal data from the written documentation yielded nursing interventions and served to more fully explain the visiting nurses’ work in the home.10 Reliance on such information, gathered retrospectively from home care patient records, may become more difficult as the incentives for and the capabilities of nurses to generate rich descriptions about their practice diminish. The patient record audit as a resource for information about the dynamics of care delivered by nurses in homes will decline in importance. Other Home Care and Nursing Research Issues OASIS and electronic documentation will alter recordkeeping practices in home care and thus affect nursing research conducted in this setting. Fiscal considerations may have more profound consequences, however, by compounding the problems of information formats described above. Prospective payment reconfigures the basis of reimbursement in health care and attention to the bottom line. Essential to HHAs’ viability is control over an appropriate patient case mix. This determination requires an assessment not only of the agency’s capacity to provide care but also its ability to finance care of potential outliers or patients whose continuing care needs exceed the reimbursement allowed under PPS. HHAs will carefully evaluate potential referrals before actually admitting patients to ensure they can meet patient needs within the time and reimbursement allotted. A fiscal mentality may come to dominate the organizational

climate of home care, changing its complexion, dynamics, and openness to researchers. Home care researchers who once were welcomed to share the resources of the agency may find that new strictures have been put in place. Administrators and other personnel may pay closer attention to how often and how much their agency can participate in scholarly investigations, especially when the researcher is seeking participation with no direct financial compensation to the agency. Regardless of the approach, research consumes home care agency personnel time and space, commodities that cost money. Whether or not sufficient slack in future home care agency budgets will allow for noncompensated research project participation is not clear. Such practices may become endangered. Recommendations Recent changes in home health care have important implications for nurse researchers focusing on the patients and the delivery of care in these settings. Home care researchers will have to address these and make reasoned accommodations in terms of questions about research design and what participation in an investigation costs an agency. Expectations should be kept as realistic as possible, especially in light of PPS. One set of issues involves considering both the benefits and the constraints of the increased volume of patient information in lean formats. Researchers should: • Develop a body of research concerning the psychometric properties (reliability and validity) of OASIS items • Explore the dynamics of communication among providers in home care • Investigate how patient information is prioritized and used by nurses to deliver patient care A second set of issues involves identifying research strategies and sources for developing rich information about patterns of interactions between patients and nurses. A retrospective review of electronic home care documentation is not likely to yield a holistic perspective of the patient, family, and the events during the episode of care nor individualized home care nurse practice patterns. A prospective, qualitative approach using interviews of the nurse, patient, and family is suggested, but prospective studies may be more difficult to implement,11 particularly for the novice nurse researcher. Investigators should consider observational data collection method or interviews. Nursing care delivered in the home may be observed and recorded systematically in field notes, or home care nurses may be interviewed. Significant researcher time and skill and financial resources are needed with this strategy.12 The time needed for obtaining informed consent in such data collection scenarios also must be addressed. To this discussion must be added a final set of issues— the new dynamics of cost and access to agency information. We recognize that direct compensation is not possible for December 2001 ■ 203

many nurse researchers, particularly with pilot projects. However, other options may be considered, most of which are based on an exchange of benefits. Suggestions to researchers include: • Become literate about OASIS generally and to what degree the HHA where data collection is to be done uses electronic records. Include agency personnel in the planning phase of the project. (A helpful OASIS website is www.hcfa.gov/medicaid/oasis/oasishmp.htm.) • Consider in-kind services.Volunteer to serve on agency committees, assist with short-term evaluation projects undertaken by the home care agency, or assign graduate nursing students to work with agency personnel on projects. Graduate nursing students may profit by discovering researchable topics for their theses or projects. • Build mechanisms into externally funded proposals to directly compensate the participating HHAs, such as a percentage of salary for agency personnel who will be working on the project • Provide continuing education programs for agency personnel, particularly programs that generate contact hours for licensed staff Conclusion Home care is undergoing dramatic informational and fiscal change as evidenced by implementation of OASIS and PPS and increasing use of electronic patient care records. These changes in combination alter home care as a setting for nursing research. Nurse researchers who have conducted investigations in home care settings or are considering such projects would be wise to educate themselves on the clinical and organizational realities currently operating. The potential for meaningful, scholarly studies in home care has never been greater. In addition, organizations undergoing great change deserve examination to determine whether particular patient groups are adversely affected or the anticipated improvements in efficiency are attained. Greater efforts need to be made by researchers in the early stages of project planning to ensure successful data collection and findings. Our purposes are to raise awareness and inform, not discourage, research in home care settings. Much can be gained from research in home health care, but new challenges are inherent in doing so. To avoid extinction, home care nurse researchers need to adapt investigations accordingly. References 1. Madigan EA, Anderson MA. Focus on research methods: the service delivery challenges of nursing research in home health care. Research Nursing Health 1999;22:349-53. 2. Health Care Financing Administration. Welcome to HCFA’s OASIS Home Page; 2000. Available at: www.hcfa.gov/medicaid/oasis/oasishmp.htm. 3. Daft RL, Lengel RH. Organizational information requirements, media

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richness and structural design. Manag Sci 1986;32:554-71. 4. Anderson MA, Helms LB. Talking about patients: communication and continuity of care. J Cardiovasc Nurs 2000;14(3):15-28. 5. Anderson MA, Helms LB, Sparbel KJ. Doing more with less and less with more. J Home Healthcare Nursing. In press. 6. Anderson MA, Pena R, Helms LB. Home care resource utilization by congestive heart failure patients: a pilot study. Public Health Nurs 1998;15:146-62. 7. Madigan EA, Fortinsky RH. Additional psychometrics for the outcomes and assessment information set (OASIS). Home Health Care Services Q. In press. 8. Anderson MA, Helms LB. Communication between continuing care organizations. Research Nursing Health 1995;18:49-57. 9. McCloskey JC, Bulechek GM, editors. Iowa Intervention Project: nursing interventions classification. St. Louis: Mosby-Year Book; 1992. 10. Frank-Hanssen M, Hanson KS, Anderson MA. Postpartum home visits: infant outcomes. J Community Health Nurs 1999;16(1):17-28. 11. Anderson MA, Foreman MD, Theis S, Helms LB. Unanticipated results of continuity of care research with elderly (part I): study design issues. West J Nurs Res 1997;19:406-13. 12. Polit DF, Hungler BP. Nursing research: principles and methods. 6th ed. Philadelphia: Lippincott; 2000. Mary Ann Anderson, PhD, RN, is an associate professor at the University of Illinois at Chicago College of Nursing, Quad Cities Regional Program, in Moline, Ill. Elizabeth A. Madigan, PhD, RN, is an assistant professor and director of the Center for Research and Scholarship at the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, Ohio. Lelia B. Helms, PhD, JD, is a professor in planning, policy, and leadership studies in the Lindquist Center at University of Iowa in Iowa City. Reprint orders: Mosby, Inc., 11830 Westline Industrial Dr., St. Louis, MO 63146-3318; phone (314) 453-4350; reprint no. 69/1/120983 doi:10.1067/mhc.2001.120983