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

Area of Science:

• Palliative Care
• Quality Improvement
• Health Services Research

Background:

• Family caregivers are crucial in serious illness care, yet outpatient palliative care lacks systematic methods to assess and support their needs.
• Recognizing caregiver needs is a core principle of palliative care, but practical resources for routine assessment are limited.

Purpose of the Study:

• To develop and pilot a quality improvement approach for routine needs assessment and support of family caregivers in outpatient palliative care.
• To create practical clinical tools for identifying and addressing caregiver distress and support requirements.

Main Methods:

• Seven interdisciplinary outpatient palliative care teams in California participated in the study.
• Family caregivers were surveyed on distress levels, support needs, and the usefulness of a provided supportive resource.
• Clinician satisfaction and the feasibility of routine caregiver assessment were qualitatively assessed.

Main Results:

• 736 caregiver needs assessments were completed, and 44 supportive toolkits were distributed.
• A majority of caregivers reported moderate to severe distress, citing emotional distress, impact on personal health, and future planning as key concerns.
• Caregivers rated the supportive toolkit highly (8.4/10 usefulness) and 92% would recommend it.

Conclusions:

• A practical and effective approach for routine family caregiver screening and support in outpatient palliative care was successfully developed and piloted.
• The study demonstrates the feasibility and utility of integrating caregiver support into standard clinical practice.
• Implementing systematic caregiver assessment and support can address significant distress and improve the caregiving experience.