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Original research
What does the general public know about palliative care? A population-based survey
  1. Marjolein Matthys1,2,
  2. Kenneth Chambaere1,2,
  3. Kim Beernaert1,2,
  4. Joachim Cohen1,3,
  5. Leen Van Brussel4,
  6. Benedicte Deforche2,5,
  7. Bert Quintiens1,3,
  8. Luc Deliens1,2 and
  9. Naomi Dhollander1,3
  1. 1 End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium
  2. 2 Department of Public Health and Primary Care, Ghent University, Ghent, Belgium
  3. 3 Department of Medicine & Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
  4. 4 Flanders Institute for Healthy Living, Brussels, Belgium
  5. 5 Movement and Nutrition for Health and Performance Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium
  1. Correspondence to Marjolein Matthys, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, 1090, Belgium; marjolein.matthys{at}ugent.be

Abstract

Objectives The need for public education on palliative care has been widely argued for. To develop effective educational strategies, a stronger evidence base is needed on what exactly is known and unknown about palliative care as well as what the differences are between subgroups.

Methods We conducted a cross-sectional population-based survey. Mail questionnaires were sent to a random sample of 4400 citizens (aged ≥16 years) within 4 municipalities in Flanders, Belgium. The Palliative Care Knowledge Scale (PaCKS) was used to measure knowledge. Associations between knowledge and sociodemographics and various experiential factors were tested, as well as the congruence between actual and self-perceived knowledge scores.

Results Response was obtained from 2008 (45.6%) citizens. The mean PaCKS score was 7.87 (SD 3.41; range 0–13) with the highest proportion (84.7%) correctly answering that palliative care is not specifically for older adults and the lowest (32.1%) correctly answering that improving the ability to participate in daily life is a palliative care goal. Being aged between 30 and 59, non-religious, more highly educated, having professional healthcare experience and knowing palliative care through personal experience were significantly associated with higher knowledge, while sex and informal caregiving experience were not. 52.4% self-perceived their knowledge as lower than it actually was.

Conclusions While the general public seems to be familiar with some basic concepts of palliative care, several key aspects remain unknown. Educational strategies, with suggested potential for community-based and experience-based approaches, may need to focus specifically on these aspects and not just on the broader palliative care concept.

  • Education and training
  • Communication

Data availability statement

The data supporting the findings of this study are securely stored on an encrypted server at the Vrije Universiteit Brussel and are available from the corresponding author, MM, on reasonable request.

https://doi.org/10.1136/spcare-2023-004384

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    Data availability statement

    The data supporting the findings of this study are securely stored on an encrypted server at the Vrije Universiteit Brussel and are available from the corresponding author, MM, on reasonable request.

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    Footnotes

    • Correction notice This article has been corrected since it was published online. The minus sign has been added to some of the values in Table 3.

    • Contributors BQ, JC, KC, ND, MM conceived and designed the study. BQ and MM collected the data. ND and MM performed the analysis. All authors contributed to the interpretation of the results. MM wrote the original draft of the manuscript and all authors critically revised it and approved the final version. LD is responsible for the overall content as guarantor.

    • Funding The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This study is supported by a grant from the Research Foundation-Flanders (file number S002219N) and part of the project 'CAPACITY: Flanders Project to Develop Capacity in Palliative Care Across Society', a collaboration between the Vrije Universiteit Brussel, Ghent University and the Catholic University Leuven, Belgium.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.