Improving knowledge and attitudes about palliative care through community education for patients, caregivers, and the public

Context: Nearly 70% of adults in the U.S. have never heard of palliative care (PC), and only about 10% are able to define PC and describe it to someone else. Lack of awareness, poor understanding, and misconceptions about PC are barriers to patients accepting or asking for a PC referral. Improving knowledge and attitudes about PC in the community may increase acceptance of PC referrals and improve timely access to PC.

Objective: To determine the degree to which a 60-minute virtual education session about PC changes non-healthcare providers’ knowledge and attitudes about PC.

Study Design & Analysis: We utilized a quasi-experimental (pre/post) design.

Setting: The educational intervention took place in a virtual setting using webinars.

Population Studied: Participants included patients, caregivers, healthcare providers, and members of the public. Participants were recruited via e-mail distribution lists, community calendars, and social media.

Intervention/Instrument: A 60-minute virtual education session about PC was offered in partnership with 5 community-based organizations. The session included discussion of the definition and philosophy of PC, services provided by PC, and distinguishing features of PC versus hospice.

Outcomes Measures: Participants were asked to complete a pre- and post-survey consisting of the 13-item Palliative Care Knowledge Scale (PaCKS) and 11 questions assessing attitudes and willingness to accept PC, based on the theory of planned behavior. Only participants who completed both surveys were included in the analysis. Changes in PaCKS total score and attitudes are reported.

Results: 109 individuals participated in one of 6 virtual education sessions, and 47 (response rate = 43%) completed both a pre- and post-session survey. Total PaCKs scores increased from 9.9 (SD 3.9) to 12.8 (0.5), an increase of 2.8 (SE=0.6) (p<0.0001). Prior to the session, less than half of participants indicated that they “strongly agree” with being willing to have a PC visit if they felt it was needed (41%) or if recommended by their doctor (43%), whereas most participants strongly agreed (74% (p<0.002) and 77% (p<0.002), respectively) after the education session.

Conclusions: Participation in a 60-minute virtual education session significantly improved knowledge and attitudes about PC. Closing these gaps in the community setting may support timely access to PC when patients need it.