Towards appropriate information provision for and decision-making with patients with limited health literacy in hospital-based palliative care in Western countries: a scoping review into available communication strategies and tools for healthcare providers

Abstract

Background Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. The aim of this study is to summarize available strategies and tools for healthcare providers towards successful communication, information provision and/or shared decision-making in supporting patients with limited health literacy in hospital-based palliative care in Western countries. Methods A scoping review was conducted. First, databases PubMed, Embase, CINAHL, and PsycINFO were searched. Next, grey literature was examined using several online databases and by contacting national experts. In addition, all references of included studies were checked. Results Five studies were included that showed that there are face-to-face, written as well as online strategies available for healthcare providers to support communication, information provision and, to a lesser extent, (shared) decision-making in palliative care for patients with limited health literacy. Strategies that were mentioned several times were: teach-back method, jargon-free communication and developing and testing materials with patients with limited health literacy, among others. Two supporting tools were found: patient decision aids and question prompt lists. Conclusions To guarantee high quality person-centred palliative care, the role of health literacy should be considered. Although there are several strategies available for healthcare providers to facilitate such communication, only few tools are offered. Moreover, the strategies and tools appear not specific for the setting of palliative care, but seem helpful for providers to support the communication, information provision and decision making with patients with limited health literacy in general. Future research should focus on which strategies or tools are (most) effective in supporting patients with limited health literacy in palliative care, and the implementation of these strategies and tools in practice. Electronic supplementary material The online version of this article (10.1186/s12904-019-0421-x) contains supplementary material, which is available to authorized users.

Designing a Mission statement Mobile app for palliative care: an innovation project utilizing design-thinking methodology

“…A recent review conducted by Noordman and colleagues identified current strategies and tools in use by healthcare providers for communication in palliative care [30]. Face-to-face communication strategies include: the teach-back method where patients repeat back information communicated to them, jargon-free communication, and adopting a slow rate of speech [30]. Written and online strategies include supplemental graphs and illustrations for conversation, and using short sentences and paragraphs [30].…”

“…Face-to-face communication strategies include: the teach-back method where patients repeat back information communicated to them, jargon-free communication, and adopting a slow rate of speech [30]. Written and online strategies include supplemental graphs and illustrations for conversation, and using short sentences and paragraphs [30]. Tools (patient decision aids and question prompt lists) were also identified in one study to facilitate patient-provider communication [30].…”

“…Written and online strategies include supplemental graphs and illustrations for conversation, and using short sentences and paragraphs [30]. Tools (patient decision aids and question prompt lists) were also identified in one study to facilitate patient-provider communication [30]. A structured list of questions for healthcare providers to ask patients was found to empower patients to discuss prognosis and end of life issues, and reduce decision burden [30].…”

“…Previously published literature, which engaged stakeholders in palliative care, was used to identify prominent issues in palliative care to design a preliminary mobile application. Current literature in palliative care identifies a prominent theme of issues with communication of patient values from both the patient and provider side [15,30,31]. We used this information to develop a mobile application.…”

“…A mobile application measuring patient values and creating a patient mission statement will also aid in the provision of care [29]. Through having healthcare providers conveniently, at-a-glance view the concepts most important to patients, there will be less ambiguity around patient values and preferences, which is a current problem in palliative care and advance care planning [7,8,30,31]. Through having a mobile application, patients will be able to input concepts important to them and healthcare providers will be able to use it as a tool for conversation and direct care to make patients feel less burdened to repeat their information over again as well.…”