'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.

Practices and perspectives of patients and healthcare professionals on shared decision-making in nephrology.

BACKGROUND: Given the complexity and variety in treatment options for advanced chronic kidney disease (CKD), shared decision-making (SDM) can be a challenge. SDM is needed for making decisions that best suit patients' needs and their medical and living situations. SDM might be experienced differently by different stakeholders. This study aimed to explore clinical practice and perspectives on SDM in nephrology from three angles: observers, patients and healthcare professionals (HCPs). METHODS: An explanatory sequential mixed methods design was used. First, in the quantitative part of the study, outpatient consultations with patients with advanced chronic kidney disease (eGFR < 20 ml/min) were video recorded and SDM was assessed using the OPTION5 instrument. Subsequently, in the qualitative part, patients and HCPs reflected on their own SDM behaviour during individual stimulated recall interviews which were analysed using deductive thematic content analysis. RESULTS: Twenty nine consultations were recorded and observed in seven hospitals. The mean SDM score was 51 (range 25-80), indicating that SDM was applied to a moderate extent. The stimulated recall interviews with patients showed that they rely on the information provision and opinion of HCPs, expect consistency and support, and desire a proactive role. They also expect to be questioned by the HCP about their SDM preferences. HCPs said they were willing to incorporate patients' preferences in SDM, as long as there are no medical contraindications. They also prefer patients to take a prominent role in SDM. HCPs ascribe various roles to themselves in supporting patients' decision-making. CONCLUSIONS: Although SDM was applied by HCPs to a moderate extent, improvement is needed, especially in helping patients get the information they need and in making sure that every patient is involved in SDM. This is even more important given the complex nature of the disease and the relatively high prevalence of limited health literacy among patients with chronic kidney disease.

The use of implicit persuasion in decision-making about treatment for end-stage kidney disease.

BACKGROUND: There are various options for managing end-stage kidney disease. Each option impacts the lives of patients differently. When weighing the pros and cons of the different options, patients' values, needs and preferences should, therefore, be taken into account. However, despite the best intentions, nephrologists may, more or less deliberately, convey a treatment preference and thereby steer the decision-making process. Being aware of such implicit persuasion could help to further optimise shared decision-making (SDM). This study explores verbal acts of implicit persuasion during outpatient consultations scheduled to make a final treatment decision. These consultations mark the end of a multi-consultation, educational process and summarise treatment aspects discussed previously. METHODS: Observations of video-recorded outpatient consultations in nephrology (n = 20) were used to capture different forms of implicit persuasion. To this purpose, a coding scheme was developed. RESULTS: In nearly every consultation nephrologists used some form of implicit persuasion. Frequently observed behaviours included selectively presenting treatment options, benefits and harms, and giving the impression that undergoing or foregoing treatment is unusual. The extent to which nephrologists used these behaviours differed. CONCLUSION: The use of implicit persuasion while discussing different kidney replacement modalities appears diverse and quite common. Nephrologists should be made aware of these behaviours as implicit persuasion might prevent patients to become knowledgeable in each treatment option, thereby affecting SDM and causing decisional regret. The developed coding scheme for observing implicit persuasion elicits useful and clinically relevant examples which could be used when providing feedback to nephrologists.

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.