“We Talk About Everything”: Experiences with Digital Health Communication in Palliative Care

Abstract

Background:

Use of digital communication tools (e.g., telehealth, patient portals) is increasing in outpatient palliative care (OPC).

Objective:

Assess patient/caregiver experiences with digital communication tools.

Design:

Qualitative.

Setting/Subjects:

Inclusion criteria were age ≥18 years, English/Spanish/Cantonese-speaking, and ≥1 telehealth OPC visit in the prior year. If patients could not converse by phone, we interviewed their caregivers.

Measures:

We developed an interview guide using the Capability-Opportunity-Motivation-Behavior framework. We analyzed semi-structured interviews using thematic analysis.

Results:

Among 32 participants, 10 were caregivers, 11 Spanish-speaking, 9 Cantonese-speaking. Theme 1: Video and in-person visits have important and distinct roles. Theme 2: Establishing a trusting rapport over video is possible. Theme 3: Engagement can be high with the patient portal despite poor usability.

Conclusions:

A flexible approach offering both video and in-person visits is ideal. Usability is a key factor in patient portal engagement. Our findings underscore the need to advocate for a permanent Medicare telehealth extension.