Background
Author (Country of Origin), Year | Aim | Method, Sample Size | Findings |
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Wallace (Scotland), 2003 [10] | To investigate pubic knowledge and understanding of PC | Postal Survey, n = 668 | 32% had no knowledge and 49% had some knowledge of PC. Believed PC to be for patients with a terminal diagnosis of cancer |
Claxton-Oldfield (Canada), 2004 [11] | To evaluate people’s understanding of PC Atlantic Canada | In person survey, n = 89 | 75.3% had never heard of PC. Believed PC to be for patients with a terminal diagnosis of cancer |
Benini et al. (Italy), 2011 [12] | To examine the awareness of PC among Italians and their perception of the needs of patients with incurable illness | In person survey, n = 1897 | 40.6% had never heard of PC. Believed it to be non-curative, for terminal patients, and it improves QoL |
Hirai et al. (Japan), 2011 [13] | To explore public awareness, knowledge, and readiness for PC services | Survey, n = 3984 | 63.1% had no knowledge of PC, and only 0.5% were using PC services. 18.6% knew about PC but did not know their availability |
MacLoed et al. (New Zealand), 2012 [14] | To investigate New Zealanders views of and local hospice | Online survey, n = 1011 | Reasonable understanding of PC reported, seen to provide comfort to people with terminal illness |
McIlfatrick et al. (UK), 2013 [15] | To establish awareness and attitudes of the general public in Northern Ireland towards PC | Online and postal survey, n = 600 | 75% had little/no knowledge of PC, 83% had never heard of PC. Associated with older people and cancer with the aim of achieving a peaceful death |
McIlfatrick et al. (UK), 2014 [16] | To explore public perceptions of PC and identify strategies to raise awareness | Semi-structured telephone survey, n = 50 | Most had a general knowledge of PC, generally associated with dying and cancer. |
Boucher et al. (USA), 2018 [17] | To understand participant knowledge PC and acceptability a new community based PC model | Focus Groups n = 18 | Participants had varying knowledge of PC |
Roulston et al. (Canada), 2018 [18] | To gauge Canadian views on PC | Online survey, n = 1540 | 43% were “somewhat aware” of PC |
Yim et al. (Korea), 2018 [19] | To navigate public awareness of PC | Online survey, n = 1500 | 60.5% had no knowledge of PC |
Koslov et al. (USA), 2018 [20] | To measure PC knowledge in laypersons and how different socioeconomic groups perform on PaCKS | Online survey, n = 301 | Participants had poor knowledge of PC, with an average score < 50% on PaCKS. |
Shalev et al. (USA), 2018) [21] | To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults | Telephone survey, n = 800 | 73% were unable to define PC. > 50% had at least one misperception, most commonly was to associate PC with EOL care |
Westerlund et (Sweden), 2018 [22] | To investigate awareness of PC in general Swedish population | Online survey, n = 2020 | 41% had no awareness of PC and 43% had some awareness. |
AbdulRaheem et al., (Nigeria), 2019 [23] | To establish current levels of awareness attitudes towards PC among the general public in Nigeria | Survey, n = 564 | Knowledge came from personal experience working in healthcare or using PC. Gender (female) and previous experience positively influenced awareness |
Alkhudairi (Saudi Arabia), 2019 [24] | To evaluate awareness, knowledge, and beliefs of the Saudi adult population regarding | Online survey, n = 1987 | 16.2% knew what PC was, 22.8% had heard of PC, and 34.4% believed PC can reduce physical suffering |
Huo et al. (USA), 2019 [25] | To examine knowledge penetration of PC in adults | Survey, n = 3194 | 71% had no knowledge of PC |
Taber (USA), 2019 [26] | To explore knowledge and beliefs about PC among the general public | Survey, n = 1162 | Respondents who perceived themselves to know a lot about PC were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). |
Aim
Methods
Design
Participants
Data collection
Data analysis
Integration
Results
Description of the sample
Factor analysis of Palliative Care Knowledge Scale (PaCKS)
Demographic variations across palliative care knowledge (PaCKS)
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Education had a significant impact on scoring across the PaCK’s total score. Respondents with higher levels of education had better knowledge of palliative care. An ANOVA revealed a significant difference depending on level of education [F (5,1187) = 24.474, p = < 0.005); with post hoc tests revealing that those with a degree level qualification or higher, scored significantly higher than those with school qualification (grades A-C) (p = < 0.005); and those with school qualification (grades D-G) (p = < 0.005).
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An independent samples t-test was conducted to compare PaCKS knowledge scores across gender. There was a significant difference in PaCKS scores between males, mean = 7.67, SD =5.06, and females, mean = 8.77, SD =4.75, t (1199) = − 3.845, p < .001. Our results indicated that females had significantly higher palliative care knowledge scores than males. Marital status also had a significant impact on PaCKS scores.
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An ANOVA revealed a significant difference across marital status [F (4,1183) = 15.3, p = < 0.005), with post hoc tests revealing that there was a significant difference in knowledge scores between those who were single and those who were married and living with husband/wife (p = < 0.001), with married people having a better knowledge score than those who were single; there was also a significant difference between those who were married and living with husband/wife, they scored higher, when compared to those who were married and separated from husband/wife (p = < 0.001) and those who were widowed (p = < 0.001). Knowledge of palliative care also increased with age.
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An ANOVA revealed a significant difference across age [F (7,1180) = 9.193, p = < 0.005], with post hoc tests revealing that there were significant differences in knowledge scores between younger and older populations; with older, for e.g. those aged 18-24 yrs. scored significantly lower than those aged 45-54 yrs. (p = < 0.005).
Palliative Care Items (PaCKS) | Correct Response | Accurate Statement, n (%) | Inaccurate Statement, n (%) |
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A goal of palliative care is to address any psychological issues brought up by serious illness | True | 694 (57.8%) | 507 (42.2%) |
Stress from serious illness can be addressed by palliative care | True | 760 (63.3%) | 441 (36.7%) |
Palliative care can help people manage the side effects of their medical treatments | True | 863 (71.9%) | 338 (28.1%) |
When people receive palliative care, they must give up their other doctors | False | 759 (63.2%) | 442 (36.8%) |
Palliative care is exclusively for people who are in the last 6 months of life | False | 536 (44.6%) | 665 (55.4%) |
Palliative care is specifically for people with cancer | False | 776 (64.6%) | 425 (35.4%) |
People must be in the hospital to receive palliative care | False | 812 (67.6%) | 389 (32.4%) |
Palliative care is designed specifically for older adults | False | 812 (67.6%) | 389 (32.4%) |
Palliative care is a team-based approach to care | True | 850 (70.8%) | 351 (29.2%) |
A goal of palliative care is to help people better understand their treatment options | True | 796 (66.3%) | 405 (33.7%) |
Palliative care encourages people to stop treatments aimed at curing their illness | False | 730 (60.8%) | 471 (39.2%) |
A goal of palliative care is to improve a person’s ability to participate in daily activities | True | 726 (60.4%) | 475 (39.6%) |
Palliative care helps the whole family cope with a serious illness | True | 870 (72.4%) | 331 (27.6%) |
Findings from thematic synthesis
Prior knowledge of palliative care
Variable understanding of palliative care
Promoting public awareness of palliative care
Participants advised that opening the conversation of palliative care to a wider audience also means considering the cultural differences that exist amongst the public in terms of their views, understanding, and the role of palliative care within end of life care. Many respondents who were interviewed openly acknowledged that their religious or cultural beliefs dictated the decisions they make in terms of their care, both physical and spiritual. A number of respondents discussed resuscitation, organ donation, cremation etc. all through the lens of their personal beliefs and were largely unconcerned with the idea of doing something different/contrary to what they were familiar with. A number of respondents also highlighted the limitations of human knowledge and technological advancement, and that our actual time of death is beyond the scope of human prediction; ‘ … the idea that there is no point almost in worrying about what was going to happen. If it’s going to happen anyway … ’ (PCACPI002).‘It’s never really talked about to be quite honest … like deaths and funerals – nobody really likes to envisage the end … it’s inevitable at some stage, but it’s sort of you don’t talk about it, it’s not going to happen, so to speak’. (PCACPI003)
Shortcomings in current palliative care information and provision
‘It’s bringing it into the discussion, it’s creating a solution. How you do it? Like I say … a certain percentage of people have life insurance. If you’ve got a mortgage, you need life insurance … but palliative care isn’t something that has been spoken about. If I’m diagnosed with a terminal illness, the house is paid off if I’m going to die. If you are not in a position where you even think you’re going to avail of palliative care at any stage in the near future, you’re not going to think about it’. (PCACPFG002).
Future strategies to improve understanding of palliative care
Discussion
Essential Messages | |
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Palliative care considered as a system of ‘best care’, not linked to specific ‘place’ or setting | |
Viewed as an active approach to care, offering solutions and improving quality of life | |
Enabling people to stay out of hospital and provided across all settings, all conditions and all times. | |
Enabling choices, decision making and facilitating goals of care for both patients and families | |
Providing expert management of symptoms from members of specialist and generalist multidisciplinary team | |
Facilitation of living independently as well as possible for as long as possible | |
Earlier integration in the patients’ journey and includes but not just focused on end of life care. |