Abstract
•Recognize validated measures to assess caregiver outcomes for research and clinical care.•Apply study findings to clinical practice by incorporation of caregiver learning and support needs into team care plan. While family caregivers are expected to be heavily involved with the day-to-day medical and personal care for individuals with serious illness, they often feel woefully unprepared for these responsibilities. Describe perception of preparedness, quality of life and burden by caregivers of patients with serious illness who are referred to home-based palliative care (HBPC). Patients and caregivers were contacted via phone to obtain consent for survey completion upon referral to HBPC. Patients or caregiver proxies completed the Edmonton Symptom Assessment Scale. Caregivers completed the Preparedness for Caregiving Scale, PROMIS-10 Quality of Life (QoL) and Zarit Burden Scale. Data were available for 95 caregivers, 40 of whom were spouses. Mean scores for caregiver outcomes are as follows with arrows indicating direction of positive scores: Preparedness (↑22.5±6.1; range 0-32); QoL-physical (↑49.2±4.6; range 16-68); QoL-mental (↑48.2±3.8; range 21-68); burden (↓13.2±9.2; range 0-48). In adjusted linear regression models, higher symptom burden for patients was significantly associated with caregivers' lower perception of preparedness (p<.01) and increased burden (p=.01) but not with caregiver QoL. Spousal caregivers were significantly more likely to report lower preparedness and QoL (both, p<.01) and increased burden (p=.05) compared to other caregivers. While caregivers of members with serious illness appear to feel prepared, report good QoL and mild burden, it is important to note that this sample may be highly biased due to the nature of the research data collection process. Other notable findings are the impact of patient symptoms on caregivers' feelings of preparedness and burden and the increased attention and support needed by spousal caregivers.
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