Study Shows Family Hospice Caregivers Also Need Routine Care Interventions
Hospice patients have an estimated life expectancy of 6 months or less; about 69% receive care at home from a family
Nov. 30, 2011 - Family Caregivers for hospice patients are “second order patients” themselves and should be routinely
assessed for stress that may signal their own care needs, according to a study by Elaine Wittenberg-Lyles, University of Kentucky.
Nearly 43 percent of caregivers studied were adult children of the patient, and roughly one-third were spouses/partners.
In addition, an overwhelming majority of caregivers were women (79 percent).
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"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.
The study, published in Qualitative Health Research, assessed the individual stressors that caregivers 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 hearing loss, had
mild to no cognitive impairment, 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.
Using a theoretical framework 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 coping strategies.
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.
The study was funded by the National Institute for Nursing Research.
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