A study led by the University of Kentucky researcher ElaineWittenberg-Lyles found that hospice family caregivers are "second orderpatients" themselves and require their own unique care needs.
The study, published in a recent issue of Qualitative Health Research ,assessed the individual stressors that caregivers experience. The researchersrecorded discussions between hospice caregivers and the intervention team. Thecaregivers were asked to identify and describe the most pressing problems orconcerns they faced.
The study enrolled hospice caregivers who were 18 years of age or older and whodid not have functional hearing loss, had mild to no cognitive impairment, andhad at least a sixth grade education. In addition, all participants had to haveaccess to a standard phone line. In total, the team collected discussions from81 participants. The study was funded by the National Institute for NursingResearch.
Using a theoretical framework called Assessing Caregivers for Teaminterventions (ACT), the researchers coded participants' responses in one ofthree categories: primary stressors, which included talk that related to theperformance of caregiving tasks; secondary stressors, talk about the personalimpact of performing caregiving tasks; and intrapsychic stressors, talk abouttheir thoughts, feelings and awareness of the caregiving role.
The ACT framework has been proposed as a way to understand caregiver strain anddevelop customized caregiver interventions to positively affect the caregivingexperience and improve outcomes. The goal of the study was to describe thevariances among stressors, targeting specific concerns for caregivers.
Wittenberg-Lyles, who holds a joint appointment in the UK College ofCommunications and the UK Markey Cancer Center, says the study further provedthat caregivers are like patients themselves and should be routinely assessedfor these stressors so that interventionists may help them with personalizedresources and coping strategies.
"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 themat home, your home turns into a hospital room and key decisions need to be madehourly. Clinicians should assume that anyone going through the stress and chaos of caring for a terminally ill family member has low health literacyand high needs for education and support."
Hospice is provided to patients who have an estimated life expectancy of sixmonths or less. About 69 percent of hospice patients in the U.S. receive careat 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 caregiverswere adult children of the patient, and roughly one-third werespouses/partners. In addition, an overwhelming majority of caregivers werewomen (79 percent).