Literature reviews reveal poor knowledge and awareness of palliative care in the public. Health literacy deficits impact access to palliative care.
Objectives:
The aim of this manuscript is to explore the public perception of palliative care in Germany.
Design:
Triangulated qualitative research design: a snowball-spread online survey and a random pedestrian survey.
Setting/Subjects:
Citizens in Germany.
Results:
The pedestrian survey (n = 100) revealed 34% of the participants being not familiar with palliative care. The online survey (n = 994) 5.7% of participants reported to not know what palliative care was. The public's perception of palliative care is mainly medicine oriented, referring to inpatient care for the immediately dying; however, further significant misperceptions were scarce.
Conclusions:
The public perception shows an indistinct picture of palliative care, and some misconceptions about the objectives and areas of responsibility of the subject, meanwhile, palliative care is known to a majority of people. Understanding partly incomplete pictures of patients and relatives may help to react appropriately in staff–patient interactions and improve public relations.
SaundersC. The evolution of palliative care. J R Soc Med, 2001; 94(9):430–432; doi: 10.1177/014107680109400904
3.
KozlovE, CarpenterBD. “What is Palliative Care?”: Variability in content of palliative care informational web pages. Am J Hosp Palliat Care, 2017; 34(3):241–247; doi: 10.1177/1049909115615566
4.
PetersJ, HeckelM, HabermannM, et al.Language in Motion—Time-Typical Vocabulary of Palliative Medicine. Zeitschrift für Palliativmedizin, 2019; 20(03):125–131; doi: 10.1055/a-0873-4234
5.
PetersJ.Fachdiskurs, Fachsprache Und Zentrale Konzepte von Palliativmedizin Und Palliativversorgung Im 21. Jahrhundert. Eine Korpusbasierte Linguistische Diskursanalyse an Fachtexten Der Jahre 2000–2019. Friedrich-Alexander-Univeristät Erlangen-Nürnberg: Erlangen; 2021.
6.
PetersJ, DykesN, HeckelM, et al.Presenting Palliative Care Units and Specialized Outpatient Palliative Care Teams on the Internet—a Corpus-Based Meta-Analysis of Websites. Zeitschrift für Palliativmedizin, 2022; 23(01):46–53; doi: 10.1055/a-1689-7524
7.
AkiyamaM, HiraiK, TakebayashiT, et al.The effects of community-wide dissemination of information on perceptions of palliative care, knowledge about opioids, and sense of security among cancer patients, their families, and the general public. Support Care Cancer, 2016; 24(1):347–356; doi: 10.1007/s00520-015-2788-4
8.
CollinsA, BrownJEH, MillsJ, et al.The impact of public health palliative care interventions on health system outcomes: A systematic review. Palliat Med, 2021; 35(3):473–485; doi: 10.1177/0269216320981722
9.
McIlfatrickS, SlaterP, BeckE, et al.Examining public knowledge, attitudes and perceptions towards palliative care: A mixed method sequential study. BMC Palliat Care, 2021; 20(1):44; doi: 10.1186/s12904-021-00730-5
10.
HiraiK, KudoT, AkiyamaM, et al.Public awareness, knowledge of availability, and readiness for cancer palliative care services: A population-based survey across four regions in Japan. J Palliat Med, 2011; 14(8):918–922; doi: 10.1089/jpm.2010.0529
11.
ZambranoSC, CentenoC, LarkinPJ, et al.Using the term “Palliative Care”: International survey of how palliative care researchers and academics perceive the term “Palliative Care.”. J Palliat Med, 2020; 23(2):184–191; doi: 10.1089/jpm.2019.0068
12.
FishmanJM, GreenbergP, BaggaMB, et al.Increasing information dissemination in cancer communication: Effects of using “Palliative,” “Supportive,” or “Hospice” care terminology. J Palliat Med, 2018; 21(6):820–824; doi: 10.1089/jpm.2017.0650
13.
BolligG, UngerM, PaniP. Is there a difference between Palliative Care and Palliative Medicine?. Palliativmedizin, 2010; 11(06):304–313; doi: 10.1055/s-0030-1248613
14.
PatelP, LyonsL. Examining the knowledge, awareness, and perceptions of palliative care in the general public over time: A scoping literature review. Am J Hosp Palliat Care, 2020; 37(6):481–487; doi: 10.1177/1049909119885899
15.
ScottD, HudsonP, CharnleyK, et al.Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland. BMC Palliat Care, 2019; 18(1):74; doi: 10.1186/s12904-019-0457-y
16.
PrabhuAV, CrihalmeanuT, HansberryDR, et al.Online palliative care and oncology patient education resources through Google: Do they meet national health literacy recommendations?. Pract Radiat Oncol, 2017; 7(5):306–310; doi: 10.1016/j.prro.2017.01.013
17.
NwosuAC, MonneryD, ReidVL, et al.Use of podcast technology to facilitate education, communication and dissemination in palliative care: The development of the AmiPal podcast. BMJ Support Palliat Care, 2017; 7(2):212–217; doi: 10.1136/bmjspcare-2016-001140
18.
PetersJ, DykesNM, HeckelM, et al.Pulling Together? Potrayal of Competence, Patient-Accessibility and Language Differences in Websites of German Hospices, in- and Outpatient Palliative Care Services. SAGE Publications;, 2020; pp. 186–187; doi: 10.1177/0269216320958098
19.
LeightonK, Kardong-EdgrenS, SchneidereithT, et al.Using social media and snowball sampling as an alternative recruitment strategy for research. Clin Simulat Nurs, 2021; 55:37–42; doi: 10.1016/j.ecns.2021.03.006
TongA, SainsburyP, CraigJ. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Q Health Care, 2007; 19(6):349–357; doi: 10.1093/intqhc/mzm042
KozlovE, CarpenterBD, RodebaughTL. Development and validation of the Palliative Care Knowledge Scale (PaCKS). Pall Supp Care, 2017; 15(5):524–534; doi: 10.1017/S1478951516000997
24.
DixeMDA, SantoIDDO, LopesS, et al.Knowledge and Myths about Palliative Care among the General Public and Health Care Professionals in Portugal. IJERPH, 2020; 17(13):4630; doi: 10.3390/ijerph17134630
25.
FliednerMC, ZambranoSC, EychmuellerS. Public perception of palliative care: a survey of the general population. Palliat Care, 2021; 15:263235242110175; doi: 10.1177/26323524211017546
26.
Claxton-OldfieldS, Claxton-OldfieldJ, RishchynskiG. Understanding of the term “palliative care”: A Canadian survey. Am J Hosp Palliat Care, 2004; 21(2):105–110; doi: 10.1177/104990910402100207
27.
WakefieldMA, LokenB, HornikRC. Use of mass media campaigns to change health behaviour. Lancet, 2010; 376(9748):1261–1271; doi: 10.1016/S0140-6736(10)60809-4
