Knowledge of Palliative Care in the Community Setting: An Interventional Study
Kaléi Kowalchick, Pennsylvania State University
Abstract: Palliative care usage has been on the rise over the last decade; however, misconceptions still exist about palliative care. Therefore, this study examined the impact of an investigator developed educational intervention on community members’ knowledge regarding palliative care. A quantitative, pre-test, post-test survey design was used to determine if exposure to an educational intervention would be associated with changes in knowledge regarding palliative care. Convenience sampling was used to recruit participants for the study from the local community. Using this design, participants were asked to complete a demographics survey, The Experience and Familiarity with Palliative Care Questionnaire, and the Palliative Care Knowledge Survey (PaCKS) before the teaching intervention and the PaCKS survey was reassessed during the post-test. Results based on an estimated marginal means indicated an increase in scores from the pre-test (x̄ = 11.97, SD = .10) to the post-test (x̄ = 12.87, SD = .04), suggesting that the educational intervention significantly increased knowledge of palliative care. Prior experience with hospice care did not correlate with palliative care knowledge furthering the need to differentiate the concepts of palliative care and hospice care. Future studies should focus on testing the intervention within a more diverse population.
Palliative care (PC) remains underutilized and misunderstood by both healthcare providers and the public (Perrin & Kazanowski, 2015). Many providers and community members identify PC as a sector of hospice or end-of-life care when they are distinctly different although complementary. While this misunderstanding exists, PC programs across the United States continue to grow and develop to better care for persons living with chronic, progressive diseases (The Center to Advance Palliative Care, 2018). Despite growth and intent, there are many barriers that patients and/or families experience that make navigating and implementing PC challenging such as lack of awareness of PC resources, fear of PC, restrictive eligibility, and poor communication (Hawley, 2017; Hou et al., 2018). With the growth and expansion of PC programs, it is important to assess the general population’s knowledge regarding this topic to help reduce the barriers associated with PC (Hou et al., 2018). To address the current gaps in the literature, the purpose of this research project was to determine if an educational intervention, focused on differentiating PC from hospice care (HC), increases community members' knowledge of PC and to assess if familiarity and experience of HC or PC correlate with community member’s knowledge of PC.
While PC has been increasing in usage throughout the last decade, there remain multiple misconceptions within the healthcare and community setting about the benefits of receiving PC, which contributes to its underutilization (Shalev et al., 2018). As the U.S. population grows older, the prevalence of chronic, progressive diseases is increasing, as well as the incidence of individuals suffering from more than one disease process. Currently, an estimated 60% of Americans live with and suffer from a chronic or progressive disease (Centers for Disease Control and Prevention (CDC), 2019). A recent study conducted by the Center to Advance Palliative Care found that 70% of the American population were “not at all knowledgeable” about the subject of PC (Buss et al., 2017). As chronic illness rates continue to increase, it is imperative to educate the community and dispel the myths and misinterpretations surrounding PC to increase the utilization of PC and quality of life in persons with progressive illnesses.
While PC was shaped by the hospice care movement, they are not interchangeable, and each type of care provides unique types of comfort to their respective patients (U.S. Department of Health and Human Services, 2017). Palliative care and HC share many similarities such as providing patients with comprehensive access to physical, psychosocial, and spiritual care to patients and their families to manage burdening symptoms and increase their quality of life while suffering from chronic, progressive diseases. However, there are many differences between their care which lead to misconceptions of PC and HC, misinformed community members, and poor utilization of care. One misconception surrounding PC includes associating PC with end-of-life care and believing that it is care designated only for the aged and dying (Shalev et al., 2015). Ultimately, this may give persons with chronic, progressive diseases or others who may be qualified for PC the impression that it is not appropriate for them or their loved ones. However, PC is best integrated during the early stages or upon diagnosis of a chronic or progressive illness to improve patient and family quality of life. It allows patients to pursue curative treatments, whereas HC is utilized within the last six months of life without life-sustaining measures to provide high-quality end-of-life care (Shalev et al., 2015).
Currently, there is a lack of initiation of PC early in the disease process despite the vast benefits early implementation has on individuals and their family units (Shalev et al., 2015). When symptoms are not managed or regulated properly, a person’s daily activities may become limited and ultimately quality of life will decrease (Hou et al., 2018). Chronic or progressive diseases such as cancer, multiple sclerosis (MS), Parkinson’s disease, and chronic kidney disease (CKD) are some examples of chronic, progressive diseases where patients can benefit from utilizing PC throughout the disease process (U.S. Department of Health and Human Services, 2017). In contrast, any patient suffering from an end-stage diagnosis with 6 months or less to live is appropriate for an HC consult. To enhance knowledge and use of these services, it is necessary to differentiate the PC and HC within the general population.
A quantitative, pre-test and post-test survey design was used to assess participants’ knowledge of PC in the community before and after an educational intervention. In addition, the Experience & Familiarity with Palliative Care Questionnaire was given to participants along with the demographic survey before the educational intervention. After obtaining Institutional Review Board approval and implied consent, data were collected and secured without identifiers and were locked and stored in an office at the host university.
A sample of 120 community members (n=120) was recruited using convenience sampling from the host university as well as holding Lunch & Learn presentations at a local home health and hospice agency in the Mid-Atlantic United States. The home health and hospice agency sponsored and held monthly presentations and this presentation was one of the featured seminars at the Lunch & Learn. Participants from the Lunch & Learn presentations were community members interested in attending the event. Flyers regarding the event were public to community members via a monthly newsletter from the home health and hospice agency. To be included in the study, participants must have been 18 years of age or older with written and verbal English fluency.
The pre-test survey combined three assessments in one packet which included Demographics, Experience & Familiarity with Palliative Care Questionnaire, and the Palliative Care Knowledge Survey (PaCKs) survey. A seven-question, demographic survey was administered to all participants to assess the population being surveyed within the community. Researchers obtained objective data such as participants' age, gender, ethnicity, educational experience, healthcare experience, and annual income. The Experience and Familiarity with Palliative Care Questionnaire was an eight-question Likert-scale questionnaire that assessed how individuals rate themselves on PC and HC knowledge, familiarity, and experience. This was an ordinal-based scale with selection categories ranging from strongly agree to strongly disagree. Reliability and validity have not been established for The Experience and Familiarity with Palliative Care Questionnaire, as it has primarily been used to provide additional information with the PaCKS survey (Kozlov et al, 2017). Kozlov (2017) developed the PaCKS survey based on an initial item tool of 38 true and false questions that underwent extensive pilot data testing regarding attitudes, knowledge, and perceptions of PC. This survey was utilized to evaluate attitudes, knowledge, and perceptions in the community population. The final PaCKS survey deployed in this study consisted of a 13-item one-factor solution with bias modeled and was selected based on significant loadings for all items and excellent indices of fit for the original study. The KR-20 value for the final 13-item version of the PaCKS survey was 0.71, which indicates adequate scale consistency, stability, and reliability within the survey (Buss et al., 2017). For each correct item answered in the PaCKS survey participants received 1 point; participants were able to receive a minimum score of 0 and a maximum score of 13.
The purpose of using both the Experience and Familiarity with Palliative Care Questionnaire and PaCKS was to meet the primary objectives of this study: determine the efficacy of an educational intervention on differentiating palliative care from hospice care, increase community members’ knowledge of PC, and assess if familiarity and experience of HC or PC correlate with community members’ knowledge of PC. Both the Experience & Familiarity with Palliative Care Questionnaire and the Palliative Care Knowledge Survey (PaCKS) questions can be found in the appendix. Participants’ surveys were identified by using a random series of numbers in the top right-hand corner of each survey.
The investigator developed an educational intervention consisting of 11 PowerPoint slides pertinent to the topic of PC and how it is differentiated from HC. Major topics within the PowerPoint included the definition of PC, goals of PC, populations who can utilize PC, care provided by PC, PC settings, and its differentiation from HC. All information utilized within the educational intervention was obtained from scholarly resources and was reviewed by all research team members.
The community members were given the pre-test, which included a demographics survey, The Familiarity and Experience with Palliative Care Questionnaire, and the PaCKS in a controlled setting, and then were instructed to listen to the educational intervention which was provided via lecture with a PowerPoint presentation. After completion of the educational intervention, all participant questions were answered, and participants were given the post-test PaCKS survey. All data were collected in one session. Scores from the pre-test and post-tests were analyzed using the Statistical Software for Social Sciences (SPSS), v. 25. Descriptive statistics were used to analyze and display demographic data, and correlations were examined between The Experience and Familiarity with Palliative Care Questionnaire and the PaCKS scores. Correlations, Fisher r to Z transformations, and multivariate tests were analyzed to determine the effectiveness of the educational intervention.
A convenience sample of 120 participants completed the study. Three community members, who completed the pre-test/post-test with extreme, outlying results, were excluded while analyzing the data due to the participants filling out the survey inconsistently. A breakdown of the demographic data is seen in Table 1.
The mean of each question in the Experience and Familiarity of Palliative Care Questionnaire was calculated and displayed in Table 2.
Spearman’s rho correlations were performed and analyzed because assumptions of normal distribution were not met by the data due to the high ceiling effect of participants scoring well on the PaCKS pre-test and post-test (Table 3). Pre-test PaCKS scores were significantly and positively associated with Palliative Care Familiarity (rs=0.44, p<0.01), Experience with Palliative Care (rs=0.40, p<0.01), Familiarity with Hospice Care (rs=0.18, p<0.05), and Experience with Hospice Care (rs=0.30, p<0.01). A central topic in the study of PC is how it differs from HC, both in terms of medical activities and in public perception. In line with this topic, Fisher r-to-Z transformations were conducted to assess the differences between changes in correlations between pre-test and post-test PaCKS scores and measures of PC and HC (Lee and Preacher, 2013; Steiger, 1980). The correlation between pre-test PaCKS scores and Familiarity with PC (rs=0.44) is significantly greater than the correlation between pre-test PaCKS scores and Familiarity with HC (rs=0.18), Z=2.935, p<0.01, while the correlation between pre-test PaCKS scores and Experience with PC (rs=0.40) does not differ from the correlation between pre-test PaCKS scores and Experience with HC (rs=0.30). Thus, familiarity but not experience is important in distinguishing between PC and HC on pre-test PC knowledge. Furthermore, the intervention significantly decreased the correlation between Familiarity with PC and PaCKS scores from rs=0.44 pre-test to rs=0.24 post-test, Z=1.81, p<0.05, and significantly decreased the correlation between Experience with PC and PaCKS scores from rs=0.58 to rs=0.40, Z=1.84, p<0.05. However, the intervention did not change the correlations between Familiarity with HC and Experience with HC from pre-test to post-test PaCKS scores. This differential impact of the intervention on PC and HC correlations with PaCKS suggests that PC and HC are separable knowledge and experiential constructs, as the intervention was focused on PC knowledge and thus did not impact the correlations with HC familiarity and experience.
A Multivariate Analysis of Covariance (MANCOVA) was performed to examine differences between the pre-test and post-test PaCKS scores to assess the impact of the educational intervention on knowledge of PC. Given the significant correlations presented in Table 3, the analysis used experience with PC, familiarity with PC, and pre-test knowledge of PC as the covariates. Results did not indicate significant associations between the covariates and pre-test and post-test outcomes associated with the educational intervention, Fs (1, 115) ≤ 1 to 2.6, all ps = 0.816 to 0.11. Results indicated a significant main effect of education intervention, Wilk’s λ = 0.13, F (1, 115) = 17.15, p < 0.001. Examination of estimated marginal means indicated an increase in scores from the pre-test (x̄ = 11.97, SD = 0.10) to the post-test (x̄ = 12.87, SD = 0.04), such that the intervention significantly increased knowledge of PC. Figure 1 below is a bar graph showing the difference n marginal means from the pre-test and post-test scores.
The purpose of this research was to determine the effectiveness of an educational intervention utilized with community members on PC knowledge and the differentiation of PC and HC as well as determine the impact familiarity and experience of PC and HC has on community members’ knowledge of PC. Through measuring participants’ knowledge of PC, it was determined that the educational intervention was an effective method for improving knowledge of PC in the community setting. While the educational intervention applies to many populations, this specific intervention works best for those with limited or no PC knowledge. This can be seen by the significant change in pre-test and post-test scores in individuals with no or limited knowledge of PC. This can help future researchers create public education programs to help shape the current knowledge gap surrounding PC in the public. While some healthcare professionals in the community were surveyed, results show that having a healthcare background does not make one more knowledgeable about PC. Therefore, it is important to educate both community members and healthcare professionals regarding PC. While 96% of participants had heard of HC, only 54% had heard of PC who answered The Experience and Familiarity of Palliative Care Questionnaire. Participants were more familiar with and had more experience with HC than PC. Additionally, participants perceived they had more knowledge of HC than PC. The findings also suggest that HC knowledge is differentiated from PC knowledge based on participants’ differences in self-rated familiarity and experience in HC and PC. Ultimately, one’s understanding or familiarity with PC is more influential than one’s experience with PC in terms of their knowledge. Overall, the educational intervention worked well in community settings regardless of an individual’s knowledge, experience, or familiarity with PC.
As PC and HC resources continue to develop and expand throughout many inpatient and outpatient settings, community members need to recognize and understand their differences in care (The Center to Advance Palliative Care, 2018). This research exhibits the differences in knowledge of PC and HC as they are two separate categories of care and should be recognized as such by community members. Increasing access to educational materials and resources can increase knowledge and awareness of PC and HC and help separate many misconceptions within the community setting. Researchers need to continue to develop proper educational interventions that are appropriate and can be accessed in a variety of community settings to increase knowledge and familiarity with PC.
It is imperative to continue to educate and provide resources for community members regarding the differences between palliative care and hospice care so individuals can continue to share their knowledge with others. Additionally, a better understanding of the differences between PC and HC allows community members to make more informed healthcare decisions for themselves and their family members. By filling the gaps of current knowledge deficits regarding PC and HC, better care communication and decision between healthcare providers and community members can be facilitated to increase the quality of life in larger populations.
Results suggest that an educational intervention in palliative care can be useful in improving knowledge of PC in the community setting. However, more educational offerings are needed for PC to flourish in a variety of geographical areas to shift community members’ perceptions of PC. In addition to educating individuals in a variety of settings, it is also important to determine and create more ways for community members who are unaware of PC services to appropriately obtain information and knowledge regarding PC. Future work must be conducted to disseminate conceptual definitions and distinctions of PC and HC. While clear theoretical concepts exist, they are not appropriately disseminated and translated to the bedside, creating a practice of inappropriate usage (Shalev et al., 2018).
Several limitations exist in the creation of the design and result of this research study. Limitations of the pre-test tool include the use of a five-point Likert scale which included a ‘neutral’ option for participants to choose from. This option makes it challenging to determine whether participants were actually familiar with or had experience with PC and HC. Additionally, more than half of the participants were between the ages of 18-24 which can be considered a limitation as this population may not have heard of or been exposed to PC. However, this age range of participants must be knowledgeable regarding PC as they often have to help make decisions for loved ones who may be eligible for PC. After analyzing the PaCKS pre-test and post-test results, it was noted that a high-ceiling effect was evident. This is primarily caused by the true-false nature of the scale allowing participants to have a 50% chance of selecting the right answer regardless of if they were knowledgeable of the question’s content. Furthermore, pre-test, intervention, and post-test were given in the same sitting. Sustained change in knowledge and differentiation could not be assessed.
The findings of this study demonstrate that a brief educational intervention on PC has the potential to impact a population community member’s knowledge regarding PC. Future research implications include replicating the study within multiple, diverse communities to discover the knowledge, familiarity, and experience of PC in a more heterogeneous population. Furthermore, replicating this study would allow for improved analysis of community members' knowledge regarding PC as well as the effectiveness of the educational intervention that was utilized in this study. As many persons who should be receiving PC are suffering from chronic, progressive diseases it would be valuable to determine if the educational intervention influences patient and community members’ conversations with their healthcare team regarding PC service referrals. Future research is needed to assess if these educational interventions lead to increase PC referrals and utilization.
When implemented appropriately, palliative care has the potential to increase the quality of life in the physical, psychosocial, and spiritual realms of a patient’s life; however, more education and communication of services are needed for PC services to be implemented appropriately. An effective method for educating large numbers of individuals on PC is through community outreach. From this study, it was found that HC knowledge is differentiated from PC knowledge and the educational intervention works best for individuals unfamiliar with PC. For PC to be utilized appropriately as a distinct service from hospice services at the end of life, further education should be provided to both providers and community members.
Buss, M.K., Rock, L.K., McCarthy, E.P. (2017) Understanding palliative care and hospice: A review for primary care providers. Mayo Clinic Proceedings, 92(2):280-286. http://ezaccess.libraries.psu.edu/login?url=https://search-proquest-com.ezaccess.libraries.psu.edu/docview/1864053800?accountid=13158. doi: http://dx.doi.org.ezaccess.libraries.psu.edu/10.1016Zj.mayocp.2016.11.007.
Centers for Disease Control and Prevention (CDC). (2019) Chronic diseases in america | CDC. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm.
Hawley, P. (2017) Barriers to access to palliative care. Palliative Care: Research and Treatment. https://doi.org/10.1177/1178224216688887
Hou, J., Hong, Y., Grewal, R., Yadav, S., Heller, I., Bian, J. Wilkie, D. (2019) Knowledge of palliative care among American adults: 2018 health information national trends survey. Journal of Pain and Symptom Management, 58 (1): 39-47. https://doi.org/10.1016/j.jpainsymman.2019.03.014
Kozlov, E., Carpenter, B.D., Rodebaugh, T.L. (2017) Development and validation of the palliative care knowledge scale (PaCKS). Palliative & Supportive Care, 15(5):524-534. http://ezaccess.libraries.psu.edu/login?url=https://search-proquest-com.ezaccess.libraries.psu.edu/docview/1938319148?accountid=13158. doi: http://dx.doi.org.ezaccess.libraries.psu.edu/10.1017/S1478951516000997.
Lee, I. A. & Preacher, K. J. (2013) Calculation from the test of the difference between two dependent correlations with one variable in common [computer software]. http://quantpsy.org.
Perrin K.O., Kazanowski M. (2015) Overcoming barriers to palliative care consultation. Critical Care Nurse, 35(5):44-52. doi:10.4037/ccn2015357.
Shalev, A., Phongtankuel, V., Kozlov, E., Shen, M.J., Adelman, R.D., Reid, M.C. (2018) Awareness and misperceptions of hospice and palliative care: A population-based survey study. American Journal of Hospice and Palliative Medicine®, 35(3):431-439. doi:10.1177/1049909117715215.
Steiger, J. H. (1980) Tests for comparing elements of a correlation matrix. Psychological Bulletin, 87, 245-251.
The Center to Advance Palliative Care. (2018) Press release: Palliative care continues its annual growth trend, according to latest center to advance palliative care analysis. https://www.capc.org/about/press-media/press-releases/2018-2-28/palliative-care-continues-its-annual-growth-trend-according-latest-center-advance-palliative-care-analysis/.
U.S. Department of Health and Human Services. (2017) What are palliative care and hospice care? National Institute on Aging. https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care.
Experience & Familiarity with Palliative Care Questionnaire
Have you heard of palliative care?
How much do you agree with this statement: “I am familiar with palliative care”.
How much do you agree with this statement: “I have experience with palliative care”.
Select any number between 1 and 10 to indicate how much knowledge you think you have about palliative care.
I know nothing at all
5-I have some knowledge
10- I am very knowledgeable
Have you heard of hospice care?
How much do you agree with this statement: “I am familiar with hospice care.”
How much do you agree with this statement: “I have experience with hospice care.”
Select any number between 1 and 10 to indicated how much knowledge you think you have about hospice care.
I know nothing at all
5-I have some knowledge
10- I am very knowledgeable
Palliative Care Knowledge Scale (PaCKS)
A goal of palliative care is to address any psychological issues brought up by serious illness. (True or False)
Stress from serious illness can be addressed by palliative care. (True or False)
Palliative Care can help people manage the side effects of their medical treatments. (True or False)
When people receive palliative care, they must give up their other doctors. (True or False)
Palliative care is exclusively for people who are in the last six months of life. (True or False)
Palliative care is specifically for people with cancer (True or False)
People must be in the hospital to receive palliative care. (True or False)
Palliative care is designed specifically for older adults. (True or False)
Palliative care is a team-based approach to care. (True or False)
A goal of palliative care is to help people understand their options. (True or False)
Palliative care encourages people to stop treatments aimed at curing their illnesses. (True or False)
A goal of palliative care is to improve a person’s ability to participate in daily activities. (True or False)
Palliative care helps the whole family cope with a serious illness. (True or False)