Public awareness of palliative care in Sweden

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 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.

Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews

“…However, there are some similarities in challenges to PC provision. The main common obstacles to the provision of PC in both developed countries and LMICs include lack of a properly trained workforce [41,[56][57][58], fear among HCPs [106,107], lack of awareness about PC [59,60,[108][109][110], limited funding and lack of coordination amongst services [106]. However, in developing countries, factors affecting the provision of PC services to cancer patients further include lack of resources and inadequate physical infrastructure.…”

Early integration of palliative care: translation, cross‐cultural adaptation and content validity of the Supportive and Palliative Care Indicators Tool in a Swedish healthcare context

“…However, it became complicated for a few participants who interpreted SPICT-SE as a scoring instrument to predict the prognosis, which created uncertainty among the participants about how to use the SPICT-SE. This interpretation may be related to a blurred understanding of the concept of palliative care (5) as being equivalent to end-of-life care, which is common among both the general population (16) and healthcare professionals in Sweden (5). Furthermore, prognostic uncertainty is a major barrier when providing palliative care since timely transitions to palliative care often are complicated by uncertain illness trajectories (17,18).…”

Death, loss and community—Perspectives from children, their parents and older adults on intergenerational community‐based arts initiatives in Sweden

“…One reason for this low community engagement may be that volunteers are not an integral part of EoL‐care (Sauter & Rasmussen, 2010). Additionally, a Swedish survey study found low public awareness of palliative care with respondents mentioning taboo, fear, shame and avoidance of EoL‐issues as barriers for raising awareness (Westerlund et al., 2018). Sallnow et al (2016) found that health promotion efforts to engage communities in EoL‐issues may help address these challenges, by supporting the development of community capacity, individual learning and personal growth.…”