‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

Sonja J McIlfatrick; Paul F Slater; Olufikayo Bamidele; Deborah Muldrew; Esther Ruth Beck; F. Hasson

doi:10.1177/02692163211015838

‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

Research output: Contribution to journal › Article › peer-review

36 Citations (Scopus)

267 Downloads (Pure)

Abstract

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown.
Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework.
Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews.
Setting/Participants: A random representative sample of adults from one region of the United Kingdom (n=1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone.
Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers.
Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

Original language	English
Pages (from-to)	1356-1365
Number of pages	10
Journal	Palliative Medicine
Volume	35
Issue number	7
Early online date	17 May 2021
DOIs	https://doi.org/10.1177/02692163211015838
Publication status	Published (in print/issue) - 1 Jul 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: “This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland”. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study.

Funding Information:
The authors would like to thank all the interviewees and all participants of the survey for their cooperation. The authors acknowledge the contributions of Dr. Sharon McCloskey and Dr. Karen Carr to the qualitative phase of data collection. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: ?This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland?. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study.

Publisher Copyright:
© The Author(s) 2021.

Funding

Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: “This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland”. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Funding Information: The authors would like to thank all the interviewees and all participants of the survey for their cooperation. The authors acknowledge the contributions of Dr. Sharon McCloskey and Dr. Karen Carr to the qualitative phase of data collection. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: ?This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland?. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Publisher Copyright: © The Author(s) 2021.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Advance care planning
Mixed Methods
knowledge
attitudes
Public
Anesthesiology and Pain Medicine
General Medicine
mixed methods
public
Advance Care Planning
Cross-Sectional Studies
Attitude
Humans
United Kingdom
Superstitions
Adult

Access to Document

10.1177/02692163211015838Licence: CC BY

02692163211015838Final published version, 367 KBLicence: CC BY

Cite this

@article{3139372233de4780bd9ea6565450c320,

title = "{\textquoteleft}It{\textquoteright}s almost superstition: If I don{\textquoteright}t think about it, it won{\textquoteright}t happen{\textquoteright}. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study",

abstract = "Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/Participants: A random representative sample of adults from one region of the United Kingdom (n=1201; response rate 56\%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7\%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a {\textquoteleft}one size fits all{\textquoteright} approach will not work; rather bespoke targeting is required with educational and media messaging aligned. ",

keywords = "Advance care planning, Mixed Methods, knowledge, attitudes, Public, Anesthesiology and Pain Medicine, General Medicine, mixed methods, public, Advance Care Planning, Cross-Sectional Studies, Attitude, Humans, United Kingdom, Superstitions, Adult",

author = "McIlfatrick, \{Sonja J\} and Slater, \{Paul F\} and Olufikayo Bamidele and Deborah Muldrew and Beck, \{Esther Ruth\} and F. Hasson",

note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: “This work was supported by HSC R\&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland”. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Funding Information: The authors would like to thank all the interviewees and all participants of the survey for their cooperation. The authors acknowledge the contributions of Dr. Sharon McCloskey and Dr. Karen Carr to the qualitative phase of data collection. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: ?This work was supported by HSC R\&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland?. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Publisher Copyright: {\textcopyright} The Author(s) 2021.",

year = "2021",

month = jul,

day = "1",

doi = "10.1177/02692163211015838",

language = "English",

volume = "35",

pages = "1356--1365",

journal = "Palliative Medicine",

issn = "0269-2163",

publisher = "SAGE Publications Ltd",

number = "7",

}

‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study. / McIlfatrick, Sonja J ; Slater, Paul F; Bamidele, Olufikayo et al.
In: Palliative Medicine, Vol. 35, No. 7, 01.07.2021, p. 1356-1365.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning

T2 - A sequential mixed methods study

AU - McIlfatrick, Sonja J

AU - Slater, Paul F

AU - Bamidele, Olufikayo

AU - Muldrew, Deborah

AU - Beck, Esther Ruth

AU - Hasson, F.

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: “This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland”. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Funding Information: The authors would like to thank all the interviewees and all participants of the survey for their cooperation. The authors acknowledge the contributions of Dr. Sharon McCloskey and Dr. Karen Carr to the qualitative phase of data collection. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: ?This work was supported by HSC R&D Division, Public Health Agency [COM/5459/2018] and the Department of Health, Northern Ireland?. The funders had no influence in the design of the study, collection, analysis and interpretation of data, in writing the manuscript, or in any other part of the study. Publisher Copyright: © The Author(s) 2021.

PY - 2021/7/1

Y1 - 2021/7/1

N2 - Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/Participants: A random representative sample of adults from one region of the United Kingdom (n=1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

AB - Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/Participants: A random representative sample of adults from one region of the United Kingdom (n=1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a ‘one size fits all’ approach will not work; rather bespoke targeting is required with educational and media messaging aligned.

KW - Advance care planning

KW - Mixed Methods

KW - knowledge

KW - attitudes

KW - Public

KW - Anesthesiology and Pain Medicine

KW - General Medicine

KW - mixed methods

KW - public

KW - Advance Care Planning

KW - Cross-Sectional Studies

KW - Attitude

KW - Humans

KW - United Kingdom

KW - Superstitions

KW - Adult

UR - https://www.scopus.com/pages/publications/85105959878

U2 - 10.1177/02692163211015838

DO - 10.1177/02692163211015838

M3 - Article

C2 - 34000901

SN - 0269-2163

VL - 35

SP - 1356

EP - 1365

JO - Palliative Medicine

JF - Palliative Medicine

IS - 7

ER -

‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study

Abstract

Bibliographical note

Funding

UN SDGs

Keywords

Access to Document

Other files and links

Fingerprint

Cite this