Institute of Nursing and Health Research, School of Nursing, Ulster University, Shore Road Newtownabbey, Antrim, BT37 0QB, Northern Ireland.
Institute of Clinical and Applied Health Research, Hull York Medical School, Allam Medical Building, University of Hull, Hull, HU6 7RX, UK.
BMC Palliat Care. 2021 Mar 17;20(1):44. doi: 10.1186/s12904-021-00730-5.
Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access.
An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis.
A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents' levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person's ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience.
Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.
姑息治疗已被公认为一个公共卫生问题，需要在更广泛的医疗体系中更早地融入。然而，研究表明，它在疾病进程中仍然被晚期使用，公众对姑息治疗的理解有限，常见的误解仍然存在。为了减少提供姑息治疗的障碍并改善其可及性，需要采取策略来解决这些问题。
采用了一个解释性的顺序混合方法研究，包括横断面调查和访谈。研究调查了社会人口统计学特征、公众对姑息治疗的认识、知识和看法，并确定了在公共卫生框架内提高认识和克服障碍的策略。使用 SPSS v25 进行了调查数据的分析，包括因子分析和非参数统计，使用主题分析进行了定性数据的分析。
共有 1201 名参与者完成了调查（58.3%为女性，平均年龄 61 岁），25 人参加了访谈。五分之一的参与者（20.1%）之前听说过姑息治疗，并对该术语有准确的理解。女性、受教育程度较高、已婚和年龄较大的人，提高了受访者的意识水平。最常见的三个误解包括：姑息治疗仅适用于生命最后 6 个月的人（55.4%回答错误）；姑息治疗的目的是解决严重疾病带来的任何心理问题（42.2%回答错误）；姑息治疗的目的是提高一个人参与日常活动的能力（39.6%回答错误）。提倡谈论姑息治疗和临终关怀，但社会禁忌限制了这种情况的发生，只限于个人经历。
目前的知识差距和误解源于有限的临时个人经历和对参与禁忌话题的恐惧，可能会阻止人们在疾病轨迹的早期获得综合姑息治疗服务。结果表明，需要开展公共教育计划，不仅要提高认识，还要在公共卫生方法中提供关键信息，这可能会改变人们对姑息治疗的态度，从而最终改善临终结局。
