People are put in nursing homes when they are able to live at home with the help of community-based services, because they don't know that's an option, says a joint study from Loyola University Chicago's Center for Urban Research and Learning and Chicago-based Access Living released in June.
The majority of nursing home residents surveyed would rather live elsewhere if the opportunity were available, said researchers, but nursing home residents often are unaware of alternatives. The study's title, "I Wish I Had Known I Could Have Stayed at Home," is a quote from a nursing home resident interviewed in the study.
"Putting people in nursing homes has been viewed by many as the right thing to do," said Loyola researcher Louis Delgado. "Families have not been exposed to the choices that are available other than being institutionalized."
"A lot of them said they want out," said Access Living's Rene Luna. "Doctors, family members and others didn't know what the options were."
The study comes six months after the Clinton administration told states to look at other options for people in nursing homes, mental hospitals and state institutions in light of last summer's Olmstead decision ("U. S. Dept. of Health and Human Services tells states they must comply with Olmstead decision," D. R. Nation, March/April).
Researchers interviewed 65 residents from 17 Chicago-area nursing homes. The average age of those interviewed was 60.v
Gaining access to interview subjects was difficult, said the report. "There is a concern of sampling bias toward residents with fewer needs, as well as toward residents living in higher-quality nursing homes." Researchers speculated that "nursing homes that accepted interviews may have felt more confident in the quality of their programs." Therefore, respondents may have not been a true cross-section of people in nursing homes, but only people in "better quality" nursing homes in which respondents had somewhat better living conditions.
In addition, "interviews were often restricted to those residents in TV or recreation rooms," said the study. "Residents confined to their rooms are not likely to be represented in the results.
"These potential biases could lead to a higher reported mean satisfaction than the actual level in the general nursing home population," said the study.
Even given these biases, the study found that over 64 percent of the respondents said they would prefer to live somewhere else "if the opportunity were available."
The preference to live somewhere else was influenced by the judgment of whether housing was adequate, said researchers.
Other findings:
-- There was a statistically significant drop in discretionary income after moving into a nursing home. The mean drop was $433.23 per month.
-- Top barriers to living in the community included
--a poor financial situation,
-- lack of information about affordable housing and assistance, and
-- lack of adequate community-based service options for those with restrictive medical conditions.
Reasons people ended up in nursing homes varied: "Some were directed to them after a hospital stay or believed it was the best place for them to be," said the study. "Others reported they could not find affordable, accessible housing. Some said they were homeless or living in substandard, filthy or unsafe housing."
Those who lived in nursing homes often felt depressed and lonely from a lack of social interaction, said the study. "People become very demoralized and dispirited in nursing homes," Luna said. "There is a lot of despair and people feel frustrated. In a nursing home, their conditions deteriorate, and it just gets worse. Then it ends up costing even more."
The report is available online at http://www.luc.edu/depts/curl/pub/index.html in PDF format; for plain text format, contact Access Living at 312-226-5900 or Ragged Edge at contact145@advocadopress.org.
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