Trial Information

Caregiver Assessments of the Quality of Home Hospice Care: A Comparison Across 3 Ethnic Groups (A Preliminary Study)

After the death of their loved-ones, caregivers will be asked to report on the care received
by their care recipient and the quality of practical and emotional care provided to them by
hospice by completing the 25-minute FEHC questionnaire over the phone. Caregivers will also
be asked 16 additional questions to assess their attitudes and beliefs about hydration at
the end of life, and a brief questionnaire to assess past and current levels of grief
(TRIG). The additional questions on hydration and grief can easily be completed in less than
10 minutes over the phone. The entire interview should take no more than 35 minutes to
complete.

Bereaved caregivers who have participated in the parent grant and have lost their loved one
within 3-23 months will be mailed a letter from Drs. Bruera and Torres inviting them to
participate in the voluntary supplemental after-death survey. The letter will include a
brief description of the research study and appropriate contact information for the
caregiver to call if she/he is interested in participating. The letters then will be
followed up by a phone call from Dr. Torres to verify receipt of the letter. If the
caregivers express their interest in participating in the study, they will be asked a few
screening questions over the phone to verify their eligibility. Once found eligible for the
study, a telephone verbal consent will be obtained.

Dr. Isabel Torres will conduct the phone interviews with 128 primary caregivers who had
previously completed the parent grant protocol.