Caregiver Assessments of the Quality of Home Hospice Care

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.