'A basic understanding'; evaluation of a blended training programme for healthcare providers in hospital-based palliative care to improve communication with patients with limited health literacy.

BACKGROUND: The non-curative setting makes communication and shared decision-making in palliative care extremely demanding. This is even more so for patients with limited health literacy. So far, research in palliative care focusing on shared decision-making with patients with limited health literacy is lacking. Recent research from our team indicates that the assessment of these patients' understanding of their situation and the implementation of shared decision-making in palliative care, needs improvement. METHODS: To improve communication and decision-making, especially with patients with limited health literacy, we developed and evaluated a blended training programme for healthcare providers. The training programme comprised of an e-learning and a team training. The evaluation was performed by 1. conducting interviews (n = 15) focused on evaluating the whole programme and, 2. coding video-recorded outpatient consultations on the extent to which providers involved patients in decision-making before (n = 19) and after (n = 20) the intervention, using the 5-item OPTION coding instrument. RESULTS: The interviews showed that healthcare providers valued the skills they had learned during the e-learning and team training. Providers specifically valued the teach-back technique, learned to use simpler wording and felt better able to recognize patients with limited health literacy. Many providers reported a change in communication behaviour as a consequence of the training programme. Suggestions for improvement for both e-learning and training were, amongst others, a follow-up team training course and a new scenarios for the e-learning about discussing palliative care. For both the pre- and the post-measurement, involving patients in decision-making lies between a minimal and a moderate effort; differences were not significant. CONCLUSIONS: The e-learning and team training were valued positively by the healthcare providers. Adaptations to the e-learning have been made after evaluation. The e-learning has been implemented in several hospitals and medical education. To improve shared decision-making in practice a more sustained effort is needed.

Affective communication with patients with limited health literacy in the palliative phase of COPD or lung cancer: Analysis of video-recorded consultations in outpatient care.

OBJECTIVES: Affective communication in outpatient care is important, especially in the palliative phase. Appropriate responses by healthcare providers to emotional cues or concerns let patients express their feelings and enhance information recall and patient satisfaction. Patients with limited health literacy experience more barriers in health-related communication and information, which makes recognizing their cues and concerns even more relevant. This study explores emotional cues/concerns expressed by patients with limited health literacy and evaluates healthcare providers' responses to these utterances. METHODS: Verona Coding Definitions of Emotional Sequences (VR-CoDES), a consensus-based system for coding patients' expression of emotional distress in medical consultations, was used in this exploratory observational study to analyse affective communication in video-recorded outpatient consultations. Consultations of 18 (10 female, 8 male) COPD or lung cancer patients (aged 70.3±6.8) with limited health literacy were recorded and analysed. Eight healthcare providers in four hospitals participated in the study. RESULTS: 101 cues and 11 concerns were observed, making 6.2 (SD = 4.2) cues or concerns per consultation. Healthcare provider responses were explicit in 56% and left scope for further disclosures in 58% of the cases. Patients with limited health literacy seem to express more cues or concerns than other patient populations. Healthcare providers responded roughly equally often in five different ways, but they shied away from further exploring the emotion disclosed in the cue/concern. Future research should elaborate on these exploratory observations, especially regarding why HCPs often only leave limited space for further disclosure of emotions in palliative care.

Persuasive communication in medical decision-making during consultations with patients with limited health literacy in hospital-based palliative care.

OBJECTIVE: Both patients in the palliative phase of their disease and patients with limited health literacy (LHL) have an increased risk of being influenced by healthcare providers (HCPs) when making decisions. This study aims to explore to what extent persuasive communication occurs during shared decision-making (SDM) by (1) providing an overview of persuasive communication behaviours relevant for medical decision-making and (2) exemplifying these using real-life outpatient consultations. METHODS: An exploratory qualitative design was applied: (1) brief literature review; (2) analysis of verbatim extracts from outpatient consultations and stimulated recall sessions with HCPs; and (3) stakeholder meetings. RESULTS: 24 different persuasive communication behaviours were identified, which can be divided in seven categories: biased presentation of information, authoritative framing, probability framing, illusion of decisional control, normative framing, making assumptions and using emotions or feelings. CONCLUSIONS: Persuasive communication is multi-faceted in outpatient consultations. Although undesirable, it may prove useful in specific situations making it necessary to study the phenomenon more in depth and deepen our understanding of its mechanisms and impact. PRACTICE IMPLICATIONS: Awareness among HCPs about the use of persuasive communication needs to be created through training and education. Also, HCPs need help in providing balanced information.

Shared Decision Making in Practice and the Perspectives of Health Care Professionals on Video-Recorded Consultations With Patients With Low Health Literacy in the Palliative Phase of Their Disease.

Introduction. An important goal of palliative care is improving the quality of life of patients and their partners/families. To attain this goal, requirements and preferences of patients need to be discussed, preferably through shared decision making (SDM). This enhances patient autonomy and patient-centeredness, requiring active participation by patients. This is demanding for palliative patients, and even more so for patients with limited health literacy (LHL). This study aimed to examine SDM in practice and assess health care professionals' perspectives on their own SDM. Methods. An explanatory sequential mixed methods design was used. Video recordings were gathered cross-sectionally of palliative care consultations with LHL patients (n = 36) conducted by specialized palliative care clinicians and professionals integrating a palliative approach. The consultations were observed for SDM using the OPTION5 instrument. Potential determinants of SDM were examined using multilevel analysis. Sequentially, stimulated recall interviews were conducted assessing the perspectives of professionals on their SDM (n = 19). Interviews were examined using deductive thematic content analysis. Results. The average SDM score in practice was moderate, varying greatly between professionals, as shown by the multilevel analysis and by varying degrees of perceived patient involvement in SDM mentioned in the interviews. To improve this, professionals recommended 1) continuously discussing all options with patients, 2) allowing time for patients to talk, and 3) using strategic timing for involving patients in SDM. Discussion. The implementation of SDM for people with LHL in palliative care varies in quality and needs improvement. SDM needs to be enhanced in this care domain because decisions are complex and demanding for LHL patients. Future research is needed that focuses on supporting strategies for comprehensible SDM, best practices, and organizational adaptations.

Health literacy, information provision and satisfaction in advanced cancer consultations: two observational studies using level of education as a proxy.

OBJECTIVES: Patients with low health literacy (LHL) might feel less informed and satisfied with provided information than patients with high health literacy (HHL). In the setting of advanced cancer, we explored whether LHL patients, compared with HHL patients are: (1) often less informed, and (2) less satisfied with clinicians' communication (a) in general and (b) following information provision specifically. METHODS: Data from two observational studies using recorded consultations were combined. Clinicians' provided information and patients' health literacy level-defined by educational levels-and satisfaction were measured. Χ2 tests and regression (moderation) analyses assessed the relation between health literacy and information provision, and between information provision and satisfaction, meanwhile exploring moderating influences of health literacy. RESULTS: Of 61 included patients, 25 (41%) had LHL. LHL and HHL patients were equally seldom informed about the disease's incurability (36% vs 42%, p=0.66). LHL patients were more often informed about the option of not pursuing anticancer therapy than HHL patients (28% vs 8%, p=0.04). LHL patients were more satisfied with clinicians' communication than HHL patients (M=9.3 vs M=8.5, p=0.03), especially when the option of no anticancer treatment was discussed (p=0.04). Discussing the disease's incurability did not influence satisfaction levels (p=0.58) for LHL and HHL patients. CONCLUSIONS: LHL patients were not less informed, yet more satisfied than HHL patients. Both groups were equally seldom informed about the disease's incurability. No anticancer therapy was mostly discussed with LHL patients who were more satisfied following this information. Clinicians should be encouraged to inform all patients about the disease status and (non)treatment options, while not overlooking empathic support.

Twelve tips to teach culturally sensitive palliative care.

With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.

Instrumental and affective communication with patients with limited health literacy in the palliative phase of cancer or COPD.

BACKGROUND: Patients have a 'need to know' (instrumental need) and a 'need to feel known' (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer. METHODS: In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers' instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items. RESULTS: Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients' care priorities. Care providers assessed patients' understanding of their disease less often. The patients' prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often. CONCLUSIONS: Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients' limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use 'teach-back' techniques and pay more attention to affective communication.

Development of Comprehensible Prescription Label Instructions: A Study Protocol for a Mixed-Methods Approach.

INTRODUCTION: Patients receive information about their medication from different sources, including prescription labels. These labels are physically attached to each package dispensed to patients and contain the most important instructions on how to use the medication correctly. However, many patients experience difficulties in understanding and applying the instructions on these labels correctly, especially patients with limited health literacy. The aim of this study is to investigate the comprehensibility of prescription label instructions among patients with adequate and limited health literacy skills, and to implement improvements in primary health care. METHODS: We used a mixed-methods approach, which consisted of four phases. Phase 1 (desk research) was divided into a systematic literature review on the comprehensibility of prescription label instructions (1a) and a content analysis of the textual elements in Dutch prescription label instructions (1b). In phase 2 (patient studies), semi-structured interviews were conducted to investigate the comprehensibility of seven prescription labels among patients with different health literacy skills (2a), and a quantitative study in which the comprehensibility of six optimized prescription labels was compared among patients with different health literacy skills (2b). Patient studies were conducted in eight Dutch pharmacies. In phase 3 optimized prescription label instructions were implemented in national medication databases which has been supported by a guideline (3a), and education of pharmacy workers (3b). Phase 4 consists of evaluating the optimized prescription label instructions by experiences from patients and pharmacists. ANTICIPATED RESULTS: This mixed-methods approach will result in scientific publications of the individual studies, and a guideline on how to compose comprehensible prescription label instructions to be put on medication packages. Optimized prescription label instructions will be implemented in national medication databases. DISCUSSION: This protocol describes a mixed-method research to compose and implement comprehensible prescription label instructions and will lead to knowledge about the comprehensibility of textual elements in these labels, with specific attention for patients with limited health literacy. Implementation of optimized prescription label instructions will lead to a better understanding of them, which may contribute to improved medication adherence. A limitation is that non-textual aspects of prescription labels are not investigated.

Communication and shared decision-making with patients with limited health literacy; helpful strategies, barriers and suggestions for improvement reported by hospital-based palliative care providers.

BACKGROUND: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients' emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care. METHODS: A qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs-11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis. RESULTS: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs' communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information. CONCLUSIONS: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.

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.

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.