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Public awareness of palliative care in Sweden

Westerlund, Caroline; Tishelman, Carol; Benkel, Inger; Fürst, Carl Johan LU ; Molander, Ulla; Rasmussen, Birgit H. LU ; Sauter, Sylvia and Lindqvist, Olav (2018) In Scandinavian Journal of Public Health
Abstract

Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ (n = 827, 41%) or ‘some’ (n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare... (More)

Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ (n = 827, 41%) or ‘some’ (n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
Awareness, palliative care, public health, surveys and questionnaires
in
Scandinavian Journal of Public Health
publisher
Taylor & Francis
external identifiers
  • scopus:85042128670
ISSN
1403-4948
DOI
10.1177/1403494817751329
language
English
LU publication?
yes
id
73008448-fec0-43b6-bbec-098810a9b079
date added to LUP
2018-03-09 08:33:04
date last changed
2018-05-29 09:43:27
@article{73008448-fec0-43b6-bbec-098810a9b079,
  abstract     = {<p>Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ (n = 827, 41%) or ‘some’ (n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.</p>},
  author       = {Westerlund, Caroline and Tishelman, Carol and Benkel, Inger and Fürst, Carl Johan and Molander, Ulla and Rasmussen, Birgit H. and Sauter, Sylvia and Lindqvist, Olav},
  issn         = {1403-4948},
  keyword      = {Awareness,palliative care,public health,surveys and questionnaires},
  language     = {eng},
  month        = {01},
  publisher    = {Taylor & Francis},
  series       = {Scandinavian Journal of Public Health},
  title        = {Public awareness of palliative care in Sweden},
  url          = {http://dx.doi.org/10.1177/1403494817751329},
  year         = {2018},
}