HOME HEALTH CARE AND SUPPORTIVE SERVICES FOR OLDER ADULTS NIH GUIDE, Volume 21, Number 18, May 15, 1992 PA NUMBER: PA-92-79 P.T. 34 Keywords: HEALTH CARE Health Services Delivery Aging/Gerontology Nursing Community/Outreach Programs Biomedical Research, Multidiscipl National Institute on Aging National Center For Nursing Research Agency for Health Care Policy and Research PURPOSE The National Institute on Aging (NIA), the National Center for Nursing Research (NCNR), and the Center for General Health Services Extramural Research, Agency for Health Care Policy and Research (AHCPR), invite qualified researchers to submit applications to investigate the nature, use, and outcomes of different types of in-home health and supportive services. In-home health care and supportive services (hereafter called home care) are defined broadly to include post-acute and long-term health care and social services provided at home. This definition excludes nursing homes but includes individual residences and the wide range of community-based residential settings (e.g., assisted living facilities) where supportive services and specialized environments enable a dependent individual to remain in the community for as long as possible. Research is encouraged on home care in general or on particular types of care (e.g., high technology home care; skilled home health care; low technology/custodial care). This program announcement supplements but does not replace earlier NIA program announcements on related topics such as: Aging and Formal Health Care (NIH Guide for Grants and Contracts, Vol. 16, No. 19, June 1987) and Economics of Aging, Health, and Retirement (NIH Guide for Grants and Contracts, Vol. 20, No. 15, April 1991). It also complements an earlier Program Note, "Research Agenda on Home Health Care" by the AHCPR (September 1988). Also relevant is the forthcoming report by the NCNR on Long-Term Care of Older Persons. The NIA was established to conduct and support research and training on the biomedical, social, and behavioral aspects of the aging process, as well as diseases and other special issues and needs of older people. In line with the Congressional mandate for both medical and non-medical research, long-term care needs of older people and their families is a major priority. The NIA is specifically interested in social and behavioral research on the interaction between older people and their caregivers with the health care system, the linkages between formal and informal care, and the structure, processes, and outcomes of new models of care. Of particular interest is research on home care and supportive services including high technology care, skilled home health care, low technology/custodial care, respite care, and board and care. The NCNR supports basic and clinical research and research training in patient care relevant to nursing including studies involving home health care and other community-based settings. The major NCNR emphases in building the science related to long-term care in the home have been on the processes and outcomes of care including the testing of intervention strategies to encourage independence, facilitate management of commonly experienced symptoms or health problems, prevent the onset of disabilities in those who are chronically ill, improve functional status and quality of life, maintain caregiver and other family support mechanisms, and facilitate transitions between health care settings and home. The AHCPR was created to enhance the quality, appropriateness, and effectiveness of health care services and access to such services. The Center for General Health Services Extramural Research (CGHSER) supports multidisciplinary extramural research, demonstrations, and evaluation activities on a broad range of health service research and health care technology issues. Studies focus on improvements in clinical practice, delivery, cost, quality, and access to care. Research on the elderly at CGHSER deals with issues of the organization, delivery, quality, cost, and financing of health services and the role of primary care in long-term care. Approximately seven million older Americans require assistance with basic tasks of daily living, a number that is expected to increase dramatically as the baby boom generation ages. Though nursing home care is often equated with long-term care, it is but one part of the long-term care continuum. For every person who is institutionalized, an estimated four or more persons in the community require some form of long-term care. The burgeoning long-term care needs of an aging society and less restrictive eligibility requirements for Federal reimbursement have fueled the expansion of the home-care industry. Care for dependent, older Americans living in the community is a priority area needing the attention of researchers, planners, practitioners, and policy analysts. The Bi-partisan Commission on Comprehensive Health Care (The Pepper Commission) called for substantial increases in long-term care research. The Commission emphasized the need for intensified research on home and community-based care to guide programmatic and policy decisions and to strengthen the current health care system. Due to an interest in cost-containment of health care services, home care has been proclaimed to be a "cost- effective" alternative to institutionalized care. Yet, existing research on home care simply does not provide an adequate basis for policy and program development. Previous studies of cost-effectiveness of in-home and community-based care have been limited by inconsistencies in definitions of services and inadequate data sources. The resulting contradictory cost-effectiveness studies point to the need for further study on this issue and the need for studies focusing on broader quality of life outcomes. In collaboration with the Administration on Aging, the NIA sponsored a conference in 1990 focussing on in-home care to identify a research agenda in this area. A detailed summary of identified research concerns is available by writing the National Institute on Aging (see INQUIRIES). In an edited volume on In-Home Care for Older People (Ory and Duncker, 1992), the authors identified three areas highlighted at the conference that need immediate attention: (1) the use of in-home services for older people with different functional needs; (2) the effectiveness of different types or packages of services for different populations, and (3) the coordination (or lack of coordination) of in-home services with physician-provided care. In addition, the significant contributions made by family and friends, the burdens experienced by families providing care, and the need for better integration and coordination of services and care providers across the total continuum of health and social care were issues requiring further investigation. The lack of a clear conceptualization of home and community-based, long-term care has been a major research obstacle. There is a need for further development of theoretical concepts, including definitions of home care and the boundaries between home care and institutional care. To increase current understanding of home care, it is necessary for investigators to begin to specify variations in the nature and types of care currently used by older adults; to examine clinical strategies and other processes of care on different populations; and to determine the effects of different settings of home and community-based care. More attention is needed on the quality of life and functional outcomes that are of crucial concern to older people and their families. Cost questions also need to be considered in research on in- home health care and other community-based residential care alternatives. Research is encouraged that specifies the broad conceptual boundaries of home care and gives the field a strong base of data and methodologies. Advances will come through an awareness of the need to draw upon interdisciplinary expertise in nursing, medicine and other clinical sciences, behavioral sciences, and health service aspects of health and aging. For example, current models of health care utilization can be expanded to pay more attention to the complex interactions of clinical and social influences. Similarly, researchers are urged to design innovative sampling strategies for minimizing typical methodological problems such as population selection bias. Researchers should also be sensitive to all participants in the care process, including clients, their families, and/or other informal care providers, as well as the potential for variability across cultural, ethnic, or gender lines. HEALTHY PEOPLE The Public Health Service (PHS) is committed to achieving the health promotion and disease prevention objectives of "Healthy People 2000," a PHS-led national activity for setting priority areas. This RFA, Home Health Care and Supportive Services for Older Adults, is related to the priority area of educational and community based programs. Potential applicants may obtain a copy of "Healthy People 2000" (Full Report: Stock No. 017-001-00474-0) or "Healthy People 2000" (Summary Report: Stock No. 017-001-00473-1) through the Superintendent of Documents, Government Printing Office, Washington, DC 20402-9325 (telephone 202-783-3238). ELIGIBILITY REQUIREMENT Applications for research grants may be made by domestic and foreign, public and private, for-profit and non-profit organizations, such as universities, colleges, hospitals, and laboratories. Women and minority investigators, in particular, are encouraged to apply. Foreign applicants are not eligible for the First Independent Research Support and Transition (FIRST) (R29) awards. MECHANISMS OF SUPPORT The primary mechanisms for support of research under this program announcement are the research project grant (R01), and FIRST Award (R29). Applicants are advised to contact the program staff of the NIA, the NCNR, or the AHCPR for further information on levels and duration of support. The AHCPR does not support the FIRST Award. RESEARCH OBJECTIVES This announcement seeks grant applications for studies on in-home health care and supportive services to increase understanding of this growing segment of the health care industry. It is anticipated that research funded under this initiative will contribute to the scientific base for informed policy recommendations and changes. Utilization and availability of in-home health care and supportive services, process and outcome of care, and populations requiring specialized care are a few of the issues that require more attention. Examples of relevant research topics include, but are not limited to: o Nature Or Type Of Home Care A broad range of studies, (i.e., clinical, epidemiological, sociological, anthropological) are needed to examine the range of existing in-home health and supportive services. Specific examples include: the impact of new health care policies on the nature and type of community care options available (e.g., eligibility criteria for coverage); impact of high-tech clinical care in the home and its impact on the individual, caregivers, and/or the health care industry; the specific content of home care services (e.g., the duration, place and frequency of respite services and how these relate to caregiver use). o Use Of And Need For Home Care Utilization of in-home health care and supportive services by older people and their families, the extent to which needs remain unmet, and the complex interactions between service need, service expectations, and service receipt are important areas for study. Others may include: epidemiological studies of the use of in-home health care and supportive services and changes in use over the course of an illness; development of criteria to measure "need for care" and examination of relationships between need and preferences; development of forecasting models to predict need for and use of in-home health care. o Process Of Home Care How care is provided in the home and what structures are available to assist the older person, family, and/or other care providers are issues of continued importance. Research that examines different models of home care and/or links specific outcomes to particular interventions is needed. Still more information is needed on the process of care from the perspective of the client, the caregiver, or both. Areas that need further investigation are: alternative approaches to care (e.g., board and care) and structures for organizing care (e.g., shared-aide services); efforts to link care providers (e.g., board and care providers) with the larger community-based system; clinical intervention strategies designed to effectively impact health-related quality of life, functional status, and/or family relationships; transitions, such as initiation of informal or formal care services or transfer to and from nursing homes, and how they relate to the stage of caregiving and changing need for services. o Outcomes Of Home Care An especially crucial aspect of in-home health care and supportive service research is defining and measuring quality. Therefore, research should focus on definitional and measurement issues related to quality as well as effectiveness for specific interventions being examined. Research may include: the effect of alternative approaches to in-home health care (e.g., personal assistance, respite care, high technology care or environmental modifications) on clients, family members, and other care providers as well as the development of more sensitive measures of stress, burden, satisfaction, and other outcomes; relevant outcomes of care, especially those that lead to determination of effective forms of relief that could be offered to caregivers; strategies for increasing quality of life, health and/or socially related; and strategies to improve the functional status of clients; the cost and effectiveness of services, how services fit into the caregiver's living arrangements, and how services fit into the dynamics of kinship, friendship, and neighborhood networks. o Special Care Populations Many subpopulations are served by in-home health care and supportive services. To target services more effectively, the identification of care needs for specific subpopulations is necessary. Areas requiring additional study are: access to and utilization of care in special populations (e.g., the oldest old, women, minority and ethnic populations, rural elderly), and; the needs and resources of adults of all ages. Comparative research is encouraged on models of care for younger disabled ("independent living") populations and their relevance to care for older persons. o Data Resources Maximum use should be made of existing data. Primary data collection, however, may be necessary and certain types of databases have been highlighted as especially relevant. Both large-scale studies and smaller state, regional or local ones, as well as studies of board and care homes serving particular subgroups are appropriate. Moreover, it is important that studies capture the diversity of various forms of home care (e.g., large v. small, ownership, urban/suburban/rural) and the residents they serve (e.g., primarily private-pay v. SSI recipients, racial and ethnic subgroups). Studies may investigate: (a) the characteristics of the environment, (b) extent and characteristics of unmet care needs among residents, (c) relationships between different forms of in-home health care and the larger system, or (d) resident, owner/operator and staff "transitions". Attention should be given to specific forms of the home care industry that remain understudied, such as non- certified home health agencies, small, unlicensed board and care homes, and unlicensed social service providers. STUDY POPULATIONS SPECIAL INSTRUCTIONS TO APPLICANTS REGARDING IMPLEMENTATION OF NIH POLICIES CONCERNING INCLUSION OF WOMEN IN CLINICAL RESEARCH STUDY POPULATIONS NIH and ADAMHA policy is that applicants for NIH/ADAMHA clinical research grants and cooperative agreements will be required to include minorities and women in study populations so that research findings can be of benefit to all persons at risk of the disease, disorder or condition under study; special emphasis should be placed on the need for inclusion of minorities and women in studies of diseases, disorders and conditions which disproportionately affect them. This policy is intended to apply to males and females of all ages. If minorities and women are excluded or inadequately represented in clinical research, particularly in proposed population- based studies, a clear compelling rationale should be provided. The composition of the proposed study population must be described in terms of gender and race/ethnic group. In addition, gender and racial/ethnic issues should be addressed in developing a research design and sample size appropriate for the scientific objectives of the study. This information should be included in the form PHS 398 in Sections 1-4 of the Research Plan AND summarized in Section 5, Human Subjects. Applicants are urged to assess carefully the feasibility of including the broadest possible representation of minority groups. However, NIH recognizes that it may not be feasible or appropriate in all research projects to include representation of the full array of United States racial/ethnic minority populations (i.e., Native Americans (including American Indians or Alaskan Natives), Asian/Pacific Islanders, Blacks, Hispanics). The rationale for studies on single minority populations groups should be provided. For the purpose of this policy, clinical research includes human biomedical and behavioral studies of etiology, epidemiology, prevention (and preventive strategies), diagnosis, or treatment of diseases, disorders or conditions, including but not limited to clinical trials. The usual NIH policies concerning research on human subjects also apply. Basic research or clinical studies in which human tissues cannot be identified or linked to individuals are excluded. However, every effort should be made to include human tissues from women and racial/ethnic minorities when it is important to apply the results of the study broadly, and this should be addressed by applicants. For foreign awards, the policy on inclusion of women applies fully; since the definition of minority differs in other countries, the applicant must discuss the relevance of research involving foreign population groups to the United States' populations, including minorities. If the required information is not contained within the application, the review will be deferred until the information is provided. Peer reviewers will address specifically whether the research plan in the application conforms to these policies. If the representation of minorities or women in a study design is inadequate to answer the scientific question(s) addressed AND the justification for the selected study population is inadequate, it will be considered a scientific weakness or deficiency in the study design and will be reflected in assigning the priority score to the application. All applications for clinical research submitted to NIH are required to address these policies. NIH funding components will not award grants or cooperative agreements that do not comply with these policies. APPLICATION PROCEDURES Applicants are to use the research grant application form PHS 398 (rev. 9/91), available at the applicant's institutional Application Control Office and from the Office of Grants Inquiries, Division of Research Grants, National Institutes of Health, Westwood Building, Room 240, Bethesda, MD 20892, telephone (301) 496-7441. Complete item 2a on the face page of the application indicating that the application is in response to this announcement and print (next to the checked box) IN-HOME HEALTH AND SUPPORTIVE SERVICES. The application (with five copies) must be mailed to: Division of Research Grants National Institutes of Health Westwood Building, Room 240 Bethesda, MD 20892** REVIEW PROCEDURES Applications will be reviewed for scientific and technical merit by study sections of the Division of Research Grants, NIH, or by the AHCPR. Following scientific-technical review, the applications will receive a second-level review by the appropriate national advisory council. AWARD CRITERIA Applicants will compete for available funds with all other approved applications assigned to the Institute/ Center/Division. The following will be considered in making funding decisions: o Quality of the proposed project as determined by peer review o Availability of funds o Program balance among research areas of the announcement INQUIRIES Written and telephone inquiries are encouraged. The opportunity to clarify any issues or questions from potential applicants is welcome. Direct inquiries regarding programmatic issues to: Dr. Marcia G. Ory Behavioral and Social Research Program National Institute on Aging Gateway Building, Room 2C234 Bethesda, MD 20892 Telephone: (301) 496-3136 Dr. Patricia Moritz Nursing Systems Branch National Center for Nursing Research Westwood Building, Room 754 5333 Westbard Avenue Bethesda, MD 20892 Telephone: (301) 496-0523 Ms. Anne Bavier or Ms. Linda Siegenthaler Center for General Health Services Extramural Research Agency for Health Care Policy and Research Executive Office Center, Suite 502 2101 East Jefferson Street Rockville, MD 20852-4908 Telephone: (301) 227-8357 Direct inquiries regarding fiscal matters to: Ms. Linda Whipp Grants and Contracts Management Office National Institute on Aging Gateway Building, Room 2N212 Bethesda, MD 20892 Telephone: (301) 496-1472 Sally A. Nichols Grants Management Officer National Center for Nursing Research Westwood Building, Room 748 Bethesda, MD 20892 Telephone: (301) 496-0237 Ralph Sloat Grants Management Officer Agency for Health Care Policy and Research 2101 East Jefferson Street, Suite 601 Rockville, MD 20852-4908 Telephone: (301) 227-8447 AUTHORITY AND REGULATIONS This program is described in the Catalog of Federal Domestic Assistance No. 93.866, No. 93.336 (Nursing Research), No. 93.180, and 93.226. Awards are made under authorization of the Public Health Service Act, Title IV, Part A (Public Law 78-410, as amended by Public Law 99-158, 42 USC 241 and 285) and Title IX, as amended (Public Law 101-239), and administered under PHS grants policies and Federal Regulations 42 CFR 52 and 45 CFR Part 74 and 42 CFR 67, Subpart A. This program is not subject to the intergovernmental review requirements of Executive Order 12372 or Health Systems Agency review. .
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