Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.

Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.

There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).

This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

To test the effectiveness of theoretically driven role model video stories in improving knowledge of palliative care among a diverse sample of older adults.

We developed three 3–4 min long theoretically driven role model video stories. We then recruited cognitively intact, English-speaking adults aged 50 and older from senior centers, assisted living, and other community-based sites in the greater Los Angeles area. Using a pretest–posttest study design, we surveyed participants using the 13-item Palliative Care Knowledge Scale (PaCKS) and also asked participants about their intentions to enroll in palliative care should the need arise. Participants first completed the pretest, viewed the three videos, then completed the posttest comprised of the same set of questions.

PaCKS score improved from an average of 4.5 at baseline to 10.0 following video screening (t(126) = 12.0, p < 0.001). Intentions to enroll oneself or a family member in palliative care rose by 103% (χ2 = 7.8, p < 0.01) and 110% (χ2 = 7.5, p < 0.01), respectively. Regression analysis revealed that participants who believed the role models are real people (β = 2.6, SE = 1.2, p < 0.05) significantly predicted higher change in PaCKS score. Conversely, participants with prior knowledge of, or experience with, palliative care (β = −5.9, SE = 0.8, p < 0.001), non-whites (β = −3.6, SE = 0.9, p < 0.001), and widows (β = −2.9, SE = 1.1, p < 0.01) significantly predicted lower changes in PaCKS score.

This study suggests that theoretically driven role model video stories may be an effective strategy to improve palliative care knowledge. Role model video stories of diverse palliative care patients provide one way to mitigate health literacy barriers to palliative care knowledge.

Despite its established benefits, palliative care (PC) is not well known among patients and family/caregivers. From a nationally representative survey, we sought to assess the following associated with PC: knowledge, knowledge sources, and beliefs.

Data were drawn from the Health Information National Trends Study (HINTS 5 Cycle 2), a cross-sectional, survey of non-institutionalized adults aged 18+ years in the USA. Data were weighted and assessed by proportional comparison and multivariable logistic regression.

A total of 3504 respondents were identified, and approximately 29% knew about PC. In the adjusted model, less PC knowledge was associated with: lower age (those aged <50), male gender, lower education (<high school graduation or high school graduate), and non-internet users. A little over half (55%) of respondents accessed healthcare providers first for PC information, and 80% considered providers the most trusted source of PC information. Most of the participants strongly/somewhat agreed that the goal of PC is to help friends and family cope with a patient's illness (90.6%), offer social and emotional support (93.4%), and manage pain and other physical symptoms (95.1%). Similarly, a majority (83.3%) strongly/somewhat agreed that it is a doctor's obligation to inform all patients with cancer about the option of PC.

PC knowledge was generally low (1-in-3 respondents knew of PC), with significant differences according to age, gender, education, and internet use. These data provide a baseline from which PC education policies and interventions may be measured.

The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals.

An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18–89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed.

The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development.

Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.