School of Nursing
Funded Research Projects: Aging and Elder Care

Community Based Collaborative Research in Long-Term Care: Ethical Issues
Principal Investigator: Susan Hickman

Abstract:
In the face of a rapidly growing aging population nationwide, there is a pressing need for increased community-based research in long-term care settings such as assisted living and residential care facilities, board and care homes, and nursing facilities to enhance residents’ quality of life. Complex ethical challenges and ill-fitting human subjects research regulations serve as barriers to the conduct of research in this setting without necessarily enhancing the safety of residents who participate in research. Numerous ethicists have explored the ethical dilemmas raised by research in this setting, but the perspectives and experiences of community partners who collaborate with long-term care researchers are surprisingly absent from discussions about ethical issues in long-term care research. This group stands to contribute greatly to our understanding of community partners’ and potential participants’ expectations around ethical safeguards for research. In turn, their input holds the potential to guide the interpretation of regulations in a way that is protective yet respectful of long-term care residents.

The members of this research team, consisting of Drs. Susan Hickman, Juliana Cartwright, and Leslie Bevan of the Oregon Health & Science University School of Nursing, are in the early phases of developing a program of research focused on ethical issues in community-based collaborative research with an emphasis on the long-term care setting. This grant proposes to test the feasibility of sampling and methodological approaches to studying this topic. Simultaneously, unique data will be collected regarding community partners and potential participants perspectives as well as experiences with the ethics of human subjects protections to help guide and inform all stakeholders involved in community-based collaborative research. Telephone interviews will be conducted with administrators at long-term care facilities and focus groups will be held with resident and family councils at facilities in Oregon that have participated in research studies as identified through a database maintained by the Office of Human Research Protections. Data will be transcribed and analyzed using established qualitative research methods. The goal of the proposed study is to enhance and promote the ethical conduct of research in LTC settings with the ultimate aspiration of enhancing the lives of residents who call such facilities “home.”

Dates of Project: 12/13/2004 – 12/12/2005
Funding Agency: Greenwall Foundation

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