Study shows hospice caregivers need routine care interventions

November 30, 2011, University of Kentucky

A study led by the University of Kentucky researcher Elaine Wittenberg-Lyles found that hospice family caregivers are "second order patients" themselves and require their own unique care needs.

The study, published in a recent issue of Qualitative Health Research, assessed the individual that experience. The researchers recorded discussions between hospice caregivers and the intervention team. The caregivers were asked to identify and describe the most pressing problems or concerns they faced.

The study enrolled hospice caregivers who were 18 years of age or older and who did not have functional , had mild to no , and had at least a sixth grade education. In addition, all participants had to have access to a standard phone line. In total, the team collected discussions from 81 participants. The study was funded by the National Institute for .

Using a called Assessing Caregivers for Team interventions (ACT), the researchers coded participants' responses in one of three categories: primary stressors, which included talk that related to the performance of caregiving tasks; secondary stressors, talk about the personal impact of performing caregiving tasks; and intrapsychic stressors, talk about their thoughts, feelings and awareness of the caregiving role.

The ACT framework has been proposed as a way to understand caregiver strain and develop customized caregiver interventions to positively affect the caregiving experience and improve outcomes. The goal of the study was to describe the variances among stressors, targeting specific concerns for caregivers.

Wittenberg-Lyles, who holds a joint appointment in the UK College of Communications and the UK Markey Cancer Center, says the study further proved that caregivers are like patients themselves and should be routinely assessed for these stressors so that interventionists may help them with personalized resources and .

"It doesn't matter how well educated you are," said Wittenberg-Lyles. "When someone you love is dying and you are in a position to care for them at home, your home turns into a hospital room and key decisions need to be made hourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacy and high needs for education and support."

Hospice is provided to patients who have an estimated life expectancy of six months or less. About 69 percent of hospice patients in the U.S. receive care at home from a family caregiver.

In Wittenberg-Lyles' study, nearly one-third of the hospice patients had a cancer diagnosis, and 21 percent had a primary or secondary diagnosis of Alzheimer's disease or dementia. Nearly 43 percent of caregivers were adult children of the patient, and roughly one-third were spouses/partners. In addition, an overwhelming majority of caregivers were women (79 percent).

Explore further: Distance caregivers for advanced cancer patients have special needs

Related Stories

Distance caregivers for advanced cancer patients have special needs

August 8, 2011
By 2012, an estimated 14 million people will serve as distance caregivers to family members who live across the state, across the region, even across the country.

Cognitive reframing can help dementia caregivers with depression, stress

November 9, 2011
Family caregivers of people with dementia experience more burden and are at greater risk of developing depression than caregivers of people with a chronic illness. A new evidence review from the Netherlands finds that a psychotherapy ...

Recommended for you

Placental accumulation of flame retardant chemical alters serotonin production in rats

January 22, 2018
A North Carolina State University-led research team has shown a connection between exposure to a widely used flame retardant chemical mixture and disruption of normal placental function in rats, leading to altered production ...

Marijuana use does not lower chances of getting pregnant

January 22, 2018
Marijuana use—by either men or women—does not appear to lower a couple's chances of getting pregnant, according to a new study led by Boston University School of Public Health (BUSPH) researchers.

Americans are getting more sleep

January 19, 2018
Although more than one in three Americans still don't get enough sleep, a new analysis shows first signs of success in the fight for more shut eye. According to data from 181,335 respondents aged 15 and older who participated ...

Wine is good for you—to a point

January 18, 2018
The Mediterranean diet has become synonymous with healthy eating, but there's one thing in it that stands out: It's cool to drink wine.

Sleep better, lose weight?

January 17, 2018
(HealthDay)—Sleeplessness could cost you when it's time to stand on your bathroom scale, a new British study suggests.

Who uses phone apps to track sleep habits? Mostly the healthy and wealthy in US

January 16, 2018
The profile of most Americans who use popular mobile phone apps that track sleep habits is that they are relatively affluent, claim to eat well, and say they are in good health, even if some of them tend to smoke.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.