Honoring What We Say We Do: Developing Real-World Tools for Routine Family Caregiver Assessment and Support in Outpatient Palliative Care

Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice.Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework.Setting: Seven, interdisciplinary, outpatient palliative care teams in California collaborated in this study.Measurements: Family caregivers were surveyed about levels of distress and support using a 10-point scale and asked about specific areas of need for support. Usefulness of a supportive caregiver resource was also measured on a 10-point scale, in addition to qualitative assessment of clinician satisfaction and feasibility of routine caregiver assessment and support.Results: Seven hundred thirty-six caregiver needs assessments were conducted and 44 supportive tool kits were distributed. A majority of family caregivers reported moderate or severe distress related to caregiving (score >= 4 on a 10-point scale). The most common sources of distress included emotional distress, worry caregiving was negatively impacting their own health, and planning for the future. Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others.Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.