Implementation of a shared decision making process for severe stroke-a mixed methods study

Implementation of a shared decision making process for severe stroke-a mixed methods study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Implementation of a shared decision making process for severe stroke-a mixed methods study Akila Visvanathan, Sarah Morton, Allan MacRaild, Polly Black, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4343615/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Purpose Clinical decisions made early after stroke can make the difference between survival with disability or death. We aimed to develop, implement and evaluate a new Shared decision making (SDM) process for severe stroke into a regional 36 bedded stroke unit. Methods We developed the process through four coproduction workshops, attempted its implementation then evaluated its impact on death, discharge to institutional care (care home or NHS continuing care) and tube feeding at 6 months. We also explored patients,’ families’ and staff views about SDM. Results Eleven people (staff and people with lived experience of stroke) attended the first co-production workshop, eight the second, seven the third and six the fourth. The new SDM process incorporated Tailored Talks (a digital platform with information about stroke) and an implementation plan.We implemented this process on 1 st August 2022. Only eight out of 1020 patients received Tailored Talks (four before and four after implementation). For the entire group there was no change in tube feeding, discharge to institutional care or death. The proportion of people with severe strokes dead at six months was lower after implementation (p=0.04), though the significance of this is uncertain. Staff interviews suggested that insufficient time, lack of a ‘human touch’ and inadequate leadership explained the lack of implementation. Conclusion Our co-produced SDM process was not effectively implemented into a stroke unit and there was no impact on the use of tube feeding, discharge to institutional care or death at six months. Hospital Medicine decision-making implementation pathway communication stroke capacity consent Figures Figure 1 Key summary points Aim: To develop, implement and evaluate a new Shared decision-making (SDM) process for severe stroke into a regional acute stroke unit. Findings: The co-produced new process for shared decision- making after severe stroke was not effectively implemented into clinical practice. There was no change in tube feeding, death or institutionalisation Message: We hope to have raised awareness of the importance of Shared decision-making including the availability of tailored information for patients and staff. Background Stroke is the second leading cause of death [1]. Around 50% of survivors are left disabled [2]. Stroke can cause anything from mild, quickly resolving, neurological deficits to severe persistent life-threatening deficits. After severe stroke, treatment decisions may determine whether the patient survives with severe disability or dies [3]. Because stroke is a sudden event, patients, families and caregivers are often unprepared for being involved in making treatment decisions. Patients may not have capacity because of aphasia, cognitive impairment or impaired consciousness [4-6]. Patients and their families may be in a state of distress; and the likely extent of recovery is often uncertain [7]. Shared decision making (SDM) is important because patient involvement is a fundamental right. Patients generally want information about their health condition and want to take an active role in decision making [8]. After severe stroke, patients and relatives wish for emotional support and prognostic information, even though outcome is difficult to predict. Health care professionals need to deal with uncertainty, and balance the communication of hope with realism [9]. Patients report that they do not always receive the opportunity for SDM after stroke [10]. The quality of SDM and quality of life after stroke are top priorities for research in severe stroke [11]. A 2018 Cochrane review of SDM in a range of patient groups found 87 studies, but the evidence was of low quality [8]. To the best of our knowledge there is just one trial of SDM in severe stroke in the United States; in which the feasibility of a Neurological Intensive Care Unit paper-based decision aid, for people with severe acute brain injury and stroke was assessed in 41 patients and 66 surrogate decision makers. [12,13]. The decision aid was feasible and well received in this study. To improve SDM after severe stroke in the UK, we developed ‘Tailored Talks,’ a digital communication platform using Powerpoint slides that facilitates tailoring, structuring and sharing of only relevant information about stroke with patients and families [14]. Our primary aim was to co-develop and embed a process for SDM for severe stroke into the stroke service at one teaching hospital site (The Royal Infirmary of Edinburgh, Scotland) using Tailored Talks as the information source about stroke; including its effects and prognosis. Our secondary aims were to evaluate whether the new process was effectively implemented, to explore whether it was associated with changes in processes and outcomes (death, discharge to institutional care (care home or NHS continuing care), use of tube feeding), to evaluate the views of patients, family and staff about the quality of SDM both before and after implementation of the new process, and explore whether patients/families’ preferred outcome (death/severe disability) at baseline matches the actual outcome at 6 months. Methods The Scotland A research ethics committee (21/SS/0044) provided ethical approval for this study. We used mixed methods: a) coproduction (months 1 to 4), b) implementation (month 6 onwards), c) audit (months 1-12), d) questionnaires (months 3-9) and e) qualitative interviews (months 6-12) with patients and relatives, and a focus group with staff. Recruitment took place between 1 st March 2022 and 30 th November 2022. Written consent was obtained from patients (or carers where patients did not have capacity) and recorded and witnessed by the research team. Co-production Co-production is a collaborative research approach that involves multiple stakeholders underpinned by three principles: (i) a structured, participatory approach designed to actively engage participants to contribute; (ii) ensuring all participant voices are heard, opinions evaluated, and appropriately acted on, and; (iii) encouraging all participants to actively contribute to the development of the SDM process for embedding Tailored Talks into practice. Our coproduction group included thirteen participants (stroke survivors, relatives, and stroke care professionals from a range of disciplines/seniorities) recruited through stroke charities and through professional networks. Recruitment was based on a voluntary opt in approach. Participants were invited to one of two introductory workshops. These were followed by four co-production workshops, each lasting about an hour, facilitated by at least two researchers (SM, AV and/or, AM), hosted online (due to Covid 19 restrictions) using NHS Scotland National Video Conferencing service between 18 January 2022 and 24 th May 2022. Of the thirteen participants recruited, eleven of these attended the first workshop, eight the second, seven the third and six the fourth workshop. The topics covered in each workshop were a) overview of the aims b) how to provide tailored information about prognosis c) how to elicit family/patients views and d) how to implement the new process. Participants were invited to consider different intervention functions (education, persuasion, incentivisation, coercion, training, restriction, environmental restructuring, modelling and enablement) in their appraisal of Tailored Talks and its role in a SDM process. During the workshops, the APEASE (Acceptability, Practicability, Effectiveness, Affordability, Side-effects and safety) criteria which is related to implementation constructs were considered [15]. Workshops were recorded using an encrypted audio recorder and transcribed verbatim into Word documents. After each co-production workshop, transcripts were imported into NVivo v11 which allowed extraction of themes emerging through the data. This thematic analysis and coding was done by two researchers [AV, SM]. The data was also mapped to the APEASE criteria. Results from the first workshop informed the development of materials and discussions at the second workshop, and so on. Audit Between 1 st February 2022 and 31 st January 2023 (months 0 to 12), we extracted data on death, and place of discharge for all patients with acute stroke seen in our hospital from the Scottish Stroke Care Audit. In order to identify severe stroke (National Institute of Health Stroke Score (NIHSS) of 15 or over), clinical staff seeing patients with acute stroke agreed to record NIHSS for all patients seen during the study period. For this specific project, the audit coordinator also extracted data from the medical records on the total NIHSS score recorded by the admitting clinicians, the use of feeding (nasogastric and percutaneous gastrostomy) tubes, and the documentation of Tailored Talks (as an indicator of implementation of the SDM process). In order to ascertain if there was a statistical difference in outcomes (tube feeding, death, discharge to institutional care (care home or NHS continuing care) at 6 months) before and after implementation of the SDM pathway, we used Chi-squared tests. Questionnaires Three months before implementation of the new process (1 st May 2022) and for three months afterwards, potential participants (acute severe stroke with NIHSS ≥ 15) were identified by the research team in collaboration with ward staff. If an NIHSS had not been performed by the clinical staff, the research team approached patients who appeared clinically to have had a severe stroke; and then the project PI (GM) calculated the NIHSS retrospectively from information in the medical records.[16] Patients with capacity and next-of-kin were approached directly. If patients did not have capacity, only the next of kin was approached. We expected to recruit 100 participants over six-months, assuming that a quarter of the ~1000 patients admitted per year would have had a severe stroke. The four-item SURE test (4 items, each with yes/no responses) [17], which is a short version of the decisional conflict scale, and the three-item CollaboRATE measure to assess the perception of being informed and involved in decision‐making steps [18], were completed face-to-face or by telephone by research nurses at baseline, weeks 2, 4 and 8. These time points were chosen based on clinician experience that key decisions and advance care plans are often made around these times (e.g. hyperacute care, fluids, feeding tubes, ’Do not attempt cardiopulmonary resuscitation’, appropriateness of treatment escalation to Critical Care and the appropriateness of using antibiotics for infection). At baseline, research nurses also assessed the simplified modified Rankin score (smRS) [19], and asked two open ended questions a) ‘If your (or your loved one’s) stroke was so severe that you (they) could no longer look after themselves and require care in a nursing home, what would be preferable to you (or your loved one): Dying comfortably from the stroke in hospital’? ‘Dying at home after a discharge for palliative care’ or ‘Surviving with disability but needing long-term care in a nursing home’? and b) ‘As you (or loved one) are now, would you prefer ‘Dying comfortably from the stroke in hospital’? ‘Dying at home after a discharge for palliative care’ or ‘Surviving with disability but needing long-term care in a nursing home’. At 6 months, we obtained data on the actual outcome (death/institutional care) and completed the smRS and asked about specific abilities (Walk (yes/No); Talk (yes/no); Eat normally (yes/No) and the anxiety/depression from the Euroquol 5D 5 level. This was done over the telephone. Qualitative interviews and focus group To obtain in-depth data about the quality of SDM, AV conducted five telephone interviews between 16/11/2022 and 25/11/2022 with one patient and four bereaved relatives. Guided by the Consolidated criteria for Reporting Qualitative research [20], two reviewers (AV and SM) independently coded transcripts using NVivo and extracted themes emerging from the data. Ideally, we would have recruited more participants but we were constrained by resources. AV and AM conducted a staff focus group on 6/12/2022; participants were recruited on an ‘opt in’ approach in response to invitation posters in staffrooms. Due to clinical constraints, only one research nurse and one physician associate attended. The discussion was audio-recorded, transcribed, coded using NVivo and AV performed the analysis . Results Co-production The feedback obtained from workshops 1 to 4, ideas for implementation and what aspects of the implementation plan could be put into practice is shown in table 1. Mapping of the feedback according to APEASE criteria are shown in Table 2. The implementation plan was registered with our department’s Quality Improvement lead prior the official implementation date of 1 st August 2022. Preparatory training in Tailored Talks had been provided to staff before implementation. Table 1. Outcome of the coproduction group and implementation Aspect of implementation Proposed approaches developed with the coproduction groups Actions taken to implement this Staff awareness of SDM and Tailored Talks and how to communicate sensitively and effectively All trained staff on the stroke unit to do on-line training on sensitive and effective conversations at end of life. Patients and families should be offered the opportunity to view the brain scan. Sensitive and effective conversations at end-of-life care after acute stroke - CHSS eLearning Talk to new junior doctors when they start their posts in August Monitor uptake of this learning module through Chest, Heart & Stroke Scotland Identify ambassadors (champions) on the ward-key person/people on each shift whose job it is to remind people about Shared Decision making (perhaps this person could wear a badge) and how Tailored Talks can fit with this. GM met with a representatives from medical staff, nursing, physiotherapy, speech and language therapy and occupational therapy to discuss the plan for SDM, encourage them to register with Tailored Talks and to do the module on sensitive and effective conversations at the end of life, and ask their teams to do the training too Consultant medical staff informed about the project at three consultant meetings April, June, July 2022 and agreed to do NIHSS for all stroke patients, and asked to register for Tailored Talks AV contacted the entire clinical team on the stroke unit to raise awareness of the project Done (30 th August 2022) In May 2022, there were 10 attempts with 3 passes, and in June 2022, there were 8 attempts and 3 passes. (note not all health care professionals would have necessarily been based at the Royal Infirmary) This was not practical following discussions with the ward team . Staff awareness of how Tailored Talks can fit in with a process for making shared decisions All staff need to register with Tailored Talks and use them whilst talking to patients about treatment options. The TT includes a YouTube video. https://www.youtube.com/watch?v=XacDNZo6sVw MD offered to provide individual training as needed Staff poster reminded staff to use this resource. Dedicated laptop or iPad for providing Tailored Talks POGO digital healthcare data: 256 healthcare professionals signed up for stroke-specific content on Tailored Talks Only one consultant and registrar attended this Posters displayed in ward areas and staff rooms This was not possible because it could not be insured. So we accessed Tailored Talks using the ward PCs and mobile computers Emotional support for families For people with severe stroke-the multidisciplinary stroke team should discuss emotional support at their weekly meetings and document as part of the MDT record whether emotional support has been considered and implemented The entire team including domestic staff and porters can provide kindness and supportive words Tailored talks includes information about the psychological impact of stroke We were unable to observe whether this occurred or not due to lack of documentation Tailored Talks were used in only 8 patients Family awareness that Tailored Talks exist and can be used to obtain information about stroke, its consequences and treatment options We need to ‘create a buzz’ about Tailored Talks Poster on the stroke unit for staff and patients/families Poster in other clinical areas e.g. Emergency department (ED), where patients might be seen initially The research team members should be responsible for creating a ‘buzz’ and raising profile of Tailored Talks Posters were displayed in the stroke unit but not in ED There was no formal way to evaluate whether a ‘buzz’ had been created Ensuring that patients and family have the opportunity to see Tailored Talks At the weekly multidisciplinary team meeting, there needs to be a discussion and documentation about whether Tailored Talks has been used-if not and if it is felt to be potentially useful, this should be documented and then actioned Tailored Talks were documented only 8 times Content of Tailored Talks-is it accessible? Currently just slides in Powerpoint. Pogo studios were asked to considering videos and provision of talking mats. This did not occur in time for the project Content of Tailored Talks-signposting towards other therapy specific information and emotional support All staff on stroke unit to review Tailored Talks materials relevant to their speciality, and let MD know if further information needs to be added. MD was not asked to add further information Shared Decision making shortly after admission to the emergency department Stroke outreach nurse and consultant seeing patients with stroke in the emergency department and on the stroke unit should acknowledge the shock of the diagnosis-and say that more specific information will be available when they reach the ward. Stroke Outreach team (who see the patients initially in the emergency department) to take into account the following: • Some decisions need to be made very quickly-there are some slides in Tailored Talks about hyperacute care. • Bite sized information is important • Often the same information needs to be given several times for it to make sense as people are so often in a state of shock We did not have sufficient resources to evaluate whether this occurred or not Documentation of the use of Tailored Talks on TRAK, as an indicator of the implementation of the new SDM process All staff who used Tailored talks as part of shared decision making needs to document their usage on TRAK The audit coordinator extracted data from TRAK from 1 st February 2022 to 31 st January 2023. Table 2. Mapping of the feedback according to APEASE criteria Workshop number What currently happens in SDM in severe stroke? What is good about the current process? What could be improved? What does current research tell us? 1 Overview of aims of the co-production INFORM · Introductions · Discuss co-production workshop(s) aims and timeline, and agreement on how the group(s) can work effectively. · Reminder of the aims of the project as a whole and the specific focus of including what SDM is. · Presentation of evidence from our previous research. Sharing existing on-line materials that are used to support SDM · Presentation of evidence from our audit of documentation of the process of SDM. KNOWLEDGE · Carry out ‘character profile’ and ‘character journey’ activities to gather knowledge about who the users of the intervention will be and what is important to them. · Carry out ‘asset mapping’ activity to gather knowledge about what the group members already do to facilitate SDM after severe stroke · Work out what training for staff might be needed EVALUATE · Summary of workshop led by facilitator with group members invited to contribute (including feedback and questions), outline next steps and date of next meeting. 2 Designing a SDM tool-information for families and patients which includes information about stroke contained in ‘Tailored Talks’ INFORM · Reflections and discussion of key points identified following workshop 1. · Presentation of relevant Tailored Talks materials. · Prediction of recovery of ‘specific abilities’ · Identify how to improve/change these materials KNOWLEDGE · Using persons derived from workshop 1 (‘character profile’ activity (1) and ‘problems and solutions’ identified by the research team from ‘character journey’(2) and ‘asset mapping’ (3) activities ask participants to complete ‘priority matrix’ (4) worksheet · Complete ‘opportunity card’ (5) activity to allow group members to suggest their idea(s) for improving the Tailored Talks. EVALUATE · Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps and date of next meeting. 3. How can we elicit patient and family views, beliefs and values? Would a checklist of topics to be covered, be useful? How can we facilitate nurses, junior doctors and senior doctors to elicit such conversations? What training is needed? INFORM · Presentation of evidence from our previous research including an audit of communication around the time of death on a stroke unit. · Reflections and discussion of key points identified following workshop 2 KNOWLEDGE · Complete the ‘solutions in practice’ activity to establish how the SDM process could be introduced (by whom, when, where) and the supporting information required to enable stroke survivors to use the intervention independently, and supported by professionals (initially), caregivers and family/friends. EVALUATE · Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps and date of next meeting. · Agree timescale and responsibility of members and researchers for contribute to the development of prototype intervention materials. 4. How should we implement this intervention in clinical practice? What is ‘quality improvement’ and how do we use the QI principles to embed the process? If there is documentation, where should this be stored? Do we need implementation groups within ward settings to embed this new intervention? INFORM · Review evidence related to effective implementation of SDM · Reflections and discussion of key points identified following workshop 3. · Agree responsibility of members and researchers for specifying how the intervention should be introduced and implemented and the supporting information required to enable staff to introduce the SDM intervention and engage with patient and family in discussion about treatment options. KNOWLEDGE · Review prototype intervention materials developed following workshop 3. EVALUATE · Participants to provide feedback on prototype materials. · Final revision of the prototype intervention, behaviour change strategies and implementation plan. · Recognition and celebration activity. · Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps. Audit From 1 st February 2022 to 31 st January 2023, 1020 patients (502 pre- and 518 post-implementation of the SDM process) with a diagnosis of acute stroke were admitted, mean age was 73 (SD 15) and 496 (48.6%) were female. We used an iterative quality improvement methodology to increase the proportion of patients with a documented NIHSS, but improvements were not sustained (Figure 1). The overall proportion having an NIHSS assessed at admission by the clinical team was 581 (57%); of these 143 (24.6%) had a NIHSS of ≥ 15. For the entire group, there was no difference tube feeding during admission, death or discharge to institutional care at 6 months, before and after implementation (table 3) The low rate of discharge to institutional care (care home or NHS continuing care) from our ward was because disabled patients were often referred on for rehabilitation in other hospitals. We did note a statistically significant reduction in death at 6 months for severe strokes but the clinical significance of this is uncertain. Table 3. Process of care and outcome before and after implementation of the new shared decision process Parameter Pre implementation Post implementation All strokes (n=502) N (%) NIHSS ≥15 (n=68) N(%) All strokes (n=518) N (%) NIHSS ≥15 (n=75) N(%) Number dead at 6 months after stroke onset 144 (29) 45* (66) 156 (30) 37 *(49) Discharge to institutional care from the stroke unit at 6 months 1 (0.2) 0 (0.0) 3 (0.6) 2 (2.7) Feeding tube- NGT 86 (17.1) 21 (30.9) 87 (16.8) 25 (33.3) Feeding tube- PEG 3 (0.6) 2 (2.9) 5 (1.0) 1 (1.3) Tailored talks documented during hospital admission 4 (0.8) 2(2.9) 4 (0.8) 2 (2.7) Note-status (dead or alive) for 13 patients in the first six month period and for 10 patients in the second six month period is unknown for various reasons including having moved out of the area *The only statistically significant difference between the first and second six month period was for higher % of severe stroke dead at 6 months in the first six month period (Chi square 4.12, p=0.04) Questionnaire data Between 1 st May and 31 st October 2022 the research nurses identified 78 potentially eligible patients by discussion with the clinical staff; of these 37 had an NIHSS <15; five died before they could be recruited, five had no capacity, no next of kin or were not proficient in English, four declined, two were moved to another hospital/nursing home before they could be recruited and four could not be reviewed after initial contact. Of the 21 patients (14 women, 7men), mean age 80 years old (range 41 -95) who were recruited, one was lost to follow-up before any assessments could be done. Of the remaining 20 patients, surrogate responses were obtained from next of kin/family for 18 and only two patients could answer the questions for themselves. Median NIHSS (measured at the time of stroke or calculated from record review [21]) was 23 (range 15-34). The preferred outcome at baseline is shown in table 4. At 6 months, 14 had died, three were in a nursing home and the three had been lost to follow-up. Of the 14 participants who had died, only one had stated at baseline that they would rather survive as they were at the time than die in a nursing home; and all 14 said that they would rather die if they developed severe disability. Table 4 summarises the responses obtained at time of consent with respect to the two questions asked. Table 5 shows the CollaboRATE and SURE responses. We cannot draw any conclusions about participant perceptions before and after implementation or about functional status at 6 months because of the small sample size, Table 4. Preferred outcome at 6 months (hypothetical situation and as the patient was at the time of the interview, provided at baseline Data (n=21) Question Death in hospital (n) Survival with severe disability (n) Lost to follow-up (n) ‘If your (or your relative's) stroke was so severe that you/they could no longer look after yourself/themselves and need care in a nursing home, what would you prefer?’ 17 3 1 ‘As you are (or as your relative is) NOW, what would you prefer?’ 13 7 1 Table 5. SURE and CollaboRATE-5 scores (Mean and standard deviation*) Mean (SD) and number of respondents(N) Baseline Week 2 Week 4 Week 8 CollaboRATE (maximum possible score is 12) 9.6 (12.3) N=20 6.8 (20.2) N=11 7.4 (15.0) N=7 5.8 (12.2) N=5 SURE (maximum possible score is 4) 3.7 (1.7) N=20 2.5 (3.3) N=11 2 (3.7) N=7 3 (3) N=5 *SD calculated using www.calculator.net/standard-deviation-calculator.html and set at ‘sample’ Qualitative interviews Five participants were interviewed (one patient, age 73 and four relatives of deceased patients (ages of deceased patients were 89, 83, 63 and 91). Three main themes were drawn from these interviews. Full quotes are available in supplementary table 1. 1. Experience of stroke and stroke care In general, participants were complimentary of the care that they received on the ward. For example, P3 (Quote 1) reported how she received what she perceived to be excellent treatment. However, some participants also reported how they could not remember, in retrospect, what had happened in hospital, though could not think of specific issues. For example, P2 described how she could not complain about the care received, describing the nurses as kind, but also noted that there was limited time spent with doctors, however it was not brisk. (Quote 2) Participants recalled feeling ‘shocked’ and focusing on implications of the event of the stroke and being concerned about having another stroke, especially when they were not of medical background themselves. 2. Diagnosis and discussions about stroke and treatment, involvement in decision making. There was variability in how different participants felt they were involved in discussions about the diagnosis, prognosis and treatment options. Four participants reported that they were kept up to date with the patients’ progress, clarity was provided about decisions, and that there was a sympathetic and supportive ethos. For example, P1 recalled how she had had a meeting with different doctors and was involved in making decisions about tube feeding, which she found easy to make having seen the patient and interpreting his actions as a knowledge of the patients’ preferences. (Quote 3) However, many (four out of five) also reported how they were either not in a position to make choices and/or ask questions about treatment (due to shock of the diagnosis or being too ill) or that they were not aware that there were choices to be made (because of the patients’ co-morbid condition or they went with the doctors’ advice) For example, P2 recalled how shocked she had felt that the patient had had a stroke and therefore trusted the doctors to make ‘the best choices’. (Quote 4) Similarly P4 reported how there was a discussion about the placement of a feeding tube but this was agreed not to be attempted in view of the families’ interpretation of what the patient would have wanted. (Quote 5) However one participant reported how having a structure and timeline on these discussions would be helpful. (Quote 6) 3. Provision of information The majority of participants (four out of five) reported how they wished for information from health care professionals to help them understand the situation, and that viewing the CT scan was helpful to their understanding, especially when the prognosis of the patient may be poor. For example, P1 reported how she wanted ‘’straight up information’’ and although ‘’scan was shocking, it helped her understand’’. Similarly P2 reported how she ‘’would have liked to’’ see her family members’ scan to understand prognosis better. Participants reported varying need for amount and type of information and this appeared to relate to how old the family member admitted with a stroke was. For example, P3 discussed how she ‘’didn’t really need any information but maybe if younger patient may need more information’’. P4 had a similar response and reported that in her circumstance, ‘’don’t think it would have helped anyway- more useful if the patient was younger’’. Three out of five participants felt that written information (e.g. leaflet) with pictures were useful and some looked up information in other sources (e.g. online). For example, P1 recalled how leaflets were provided, and that it was ‘’helpful to have pictures in the leaflets that were provided’’ but also that they were looking for alternative sources of information to further confirm their understanding of the situation; ‘’we looked up YouTube anyway’’. However the timing of information provision was raised by several participants who felt that this should be given later on in the patients’ journey when they were less shocked and therefore able to absorb information better. (Quote 7) In terms of delivery of information, face-to-face was considered a good approach – having things explained in person, rather than over the phone or through a leaflet. P4 reported how he felt that the ‘personal touch’ is always the best. Tailored talks as a mode of information provision Only one participant had the experience of receiving information through Tailored Talks. P2 recalled how this information was given, and reported how she felt that it was a shock to hear about the prognosis at that stage but felt that looking at it later would have been helpful. (Quote 8) Three out of the four remaining participants, who had not received Tailored Talks, felt that this would have been useful to them when given at the ‘’right time’’. For example, P3 expressed how he thought that information provided through Tailored Talks would have been a good idea especially with pictures but this would be best given later on in the patients’ journey. (Quote 9) Similarly P5 expressed how such information would have been very useful to her and her family. (Quote 10) Staff focus group. Five participants were initially recruited but only two could attend due to clinical service pressures. Due to lack of resources, only one reviewer (AV) analysed the data. Full quotes are in supplementary table 2. There were two main themes drawn from the discussions: 1. Experience of Tailored talks and its use Participants felt that Tailored Talks was a good source of information and often used Tailored Talks as an educational resource (Quote 1) Drawing on their own experience and observation of their medical colleagues, they have used Tailored Talks on the ward for medication discussions which were termed as ‘’low stake conversations’’ when compared to discussions involving feeding or end of life which were felt to be ‘’high stake conversations.’’ (Quote 2) On further questioning, the participants alluded to ‘’high stake conversations’’ as those where the decisions were likely to involve discussions around death or severe disability, which they did not feel comfortable at their level of medical training. 2. Barriers to TT use. a) The lack of time Participants felt that on a busy stroke ward, they were unable to justify extra time to make a talk to deliver. (Quote 3) The lack of equipment (iPads or computers on wheels) on the ward was reported as another barrier. b) Information that staff felt may not be patient friendly Participants also reflected on situations where when they had delivered Tailored Talks to patients or their families; and in these situations, the participants were told that the recipients had felt that this was ‘’too much’’ and ‘’too medical’’ for them. (Quote 4) c) A perceived lack of patient contact/ human touch Participants also drew on their own experiences and from witnessing colleagues in similar situations, that using technology to divulge information took away from eye contact. (Quote 5) d) Lack of leadership The lack of consultant usage of Tailored Talks was reported to be a major barrier for the lack of its use by other members of the team. (Quote 6) Discussion This study has many strengths; it was a mixed methods study to develop and implement a SDM process. We made clear comparisons of various parameters using a multi modal approach (audit, questionnaire study, qualitative interviews and focus group) before and after the implementation of this process. Our SDM process incorporated all the key elements recommended by the American Heart Association for cardiovascular SDM except for ‘decision coaches’ [22]. We conducted training and education for patients, families and staff to alert them of the importance of SDM and attempted to empower and enlighten all relevant individuals in being involved in this process. However, despite using coproduction methodology to develop a new SDM process and implementation plan, our audit of >1000 patients suggests that the process was not effectively implemented and there were no changes in death, discharge to institutional care or tube feeding at 6 months for the entire group. We faced several challenges in the implementation of this process; specifically, with recruitment, measuring change over time and financial/time constraints of researchers and staff. We recruited only 21 patients to the questionnaire study; this was probably because only just over half of patients had an NIHSS recorded by the clinical staff, some patients died before they could be consented and some declined. The staff focus group was under-represented due to clinical constraints. Although we demonstrated feasibility of the SURE and CollaboRATE questionnaires, because the sample size fell over time, we cannot comment on longitudinal changes. There were insufficient data to determine whether the scores were different pre-and post-implementation. Staff group opinions were that there had been insufficient time to use Tailored Talks, that the materials were not ‘patient friendly’ and that there had been a lack of consultant leadership. Due to financial constraints, when implementing the SDM process we were not able to identify ‘champions’ on the ward, or provide iPads, as advised by our coproduction group. Whilst we adopted a rigorous qualitative approach towards our interviews, due to limited resources, we were only able to interview five participants. Ideally, we would have purposefully sampled participants and performed more interviews to further ensure that data saturation had been achieved. However, from the interviewer and reviewers’ experience, even from the few interviews, participants seemed to be iterating similar views, and therefore the data we obtained from this, we felt, was a good representation of our study population. Themes obtained were consistent with previous studies (experience of stroke and stroke care, diagnosis and discussions about stroke and treatment, involvement in decision making and provision of information [4,6,7]. The range of participants’ responses were wide, perhaps reflecting a wide range of values, beliefs, and prior experiences (of medical care and illness), differences in stroke characteristics (e.g. severity and neurological deficits), and variation in how different health care professionals approached SDM. Our study has highlighted several challenges in the implementation of a SDM process for severe stroke within the stroke unit. It is possible that some of these challenges were related to the timing of implementation; this was just post COVID when there were massive service pressures on the National Health Service. Our findings and observations corroborate with findings from the MAGIC (making good decisions in collaboration) programme. [23] Specifically, changing preferences and opinions of patients and caregivers, clear clinical demands faced by clinical teams with other competing priorities thus reducing their ability to participate in SDM and the challenge of measuring sustained learning from education and training sessions. It is also possible that clinicians felt that they were already practising SDM and therefore being reluctant to a change in process. Had the new process been successfully implemented into practice, our next step would have been a feasibility randomised trial, likely a step wedged design. Instead, consideration needs to be given to the barriers and decide whether we should refine our SDM process and attempt implementation again. Tailored Talks are currently being used in NHS Lothian to counsel patients about anticoagulation for atrial fibrillation, for post-Covid 19 care and to recruit patients to a platform trial of intracerebral haemorrhage [24]. Experience in these areas will inform our next steps. In summary, our new co-produced process for SDM after severe stroke incorporating Tailored Talks was not effectively implemented into practice and there was no change in measured outcomes. However, we hope to have raised awareness amongst patients, families and staff of the importance of SDM in severe stroke and the availability of educational materials through Tailored Talks. Declarations Acknowledgements We are grateful to patients and families who participated, the members of the Coproduction group, the clinical staff involved in the management of the patients with severe stroke, and the research nurses Jessica Crossan, Mairi MacDonald, Sarah Risbridger for recruiting patients. Jessica Crossan, Mairi MacDonald, Sarah Risbridger (research nurses). Edinburgh and Lothian Health Foundation Reference 1339 supported this work This work has not been published elsewhere, nor is it under consideration for publication anywhere else. All authors contributed to the study conception and design. Material preparation, data collection and analysis was performed by Akila Visvanathan, Gillian Mead, Sarah Morton, Allan MacRaild, Polly Black and Sophie Gilbert. First draft of the manuscript was written by Akila Visvanathan and all authors have commented on versions of the manuscript. All authors have reviewed and approved the final manuscript. Competing interests Authors have not declared any competing interests References Feigin VL, Brainin M, Norrving B, et al. World Stroke Organization (WSO): Global Stroke Fact Sheet 2022. International Journal of Stroke . 2022;17(1):18-29. doi:10.1177/17474930211065917 Donkor ES. Stroke in the 21 st Century: A Snapshot of the Burden, Epidemiology, and Quality of Life. Stroke Res Treat. 2018 Nov 27;2018:3238165. doi: 10.1155/2018/3238165. PMID: 30598741; PMCID: PMC6288566. Mead GE Shared decision making in older people after severe stroke. Age Ageing in press Kendall M, Cowey E, Mead G, Barber M, McAlpine C, Stott DJ, Boyd K, Murray SA. Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study. CMAJ. 2018 Mar 5;190(9):E238-E246. doi: 10.1503/cmaj.170604. PMID: 29507155; PMCID: PMC5837872. Visvanathan A, Dennis M, Mead G, Whiteley WN, Lawton J, Doubal FN. Shared decision making after severe stroke—How can we improve patient and family involvement in treatment decisions? International Journal of Stroke. 2017;12(9):920-922. doi:10.1177/1747493017730746 Visvanathan A., Mead GE, Dennis M, Whiteley W, Doubal F, Lawton J Maintaining hope after a disabling stroke: A longitudinal qualitative study of patients’ experiences, views, information needs and approaches towards making treatment decisions. Plos one 2019; September . https://doi.org/10.1371/journal.pone.0222500 Visvanathan, A., Mead, G.E., Dennis, M. et al. The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study. BMC Med Inform Decis Mak 20 , 98 (2020). https://doi.org/10.1186/s12911-020-01137-7 Légaré F, Adekpedjou R, Stacey D, Turcotte S, Kryworuchko J, Graham ID, Lyddiatt A, Politi MC, Thomson R, Elwyn G, Donner‐Banzhoff N. Interventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews 2018, Issue 7. Art. No.: CD006732. DOI: 10.1002/14651858.CD006732.pub4. Accessed 11 January 2024 Doubal F, Cowey E, Bailey F, et al. The Key Challenges of Discussing End-Of-Life Stroke Care with Patients and Families: A Mixed-Methods Electronic Survey of Hospital and Community Healthcare Professionals. Journal of the Royal College of Physicians of Edinburgh. 2018;48(3):217-224. doi:10.4997/jrcpe.2018.305 Prick JCM, Zonjee VJ, van Schaik SM, Dahmen R, Garvelink MM, Brouwers PJAM, Saxena R, Keus SHJ, Deijle IA, van Uden-Kraan CF, van der Wees PJ, Van den Berg-Vos RM; Santeon VBHC stroke group. Experiences with information provision and preferences for decision making of patients with acute stroke. Patient Educ Couns. 2022 May;105(5):1123-1129. doi: 10.1016/j.pec.2021.08.015. Epub 2021 Aug 25. PMID: 34462248. Mason B, Boyd K, Doubal F, Barber M, Brady M, Cowey E, Visvanathan A, Lewis S, Gallacher K, Morton S, Mead GE. Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study. Stroke. 2021 Nov;52(11):3507-3513. doi: 10.1161/STROKEAHA.120.032650. Epub 2021 Jul 16. PMID: 34266306; PMCID: PMC8547585 Muehlschlegel S, Goostrey K, Flahive J, Zhang Q, Pach JJ, Hwang DY. Pilot Randomized Clinical Trial of a Goals-of-Care Decision Aid for Surrogates of Patients With Severe Acute Brain Injury. Neurology. 2022 Oct 3;99(14):e1446-e1455. doi: 10.1212/WNL.0000000000200937. PMID: 35853748; PMCID: PMC9576301. Muehlschlegel S, Hwang DY, Flahive J, Quinn T, Lee C, Moskowitz J, Goostrey K, Jones K, Pach JJ, Knies AK, Shutter L, Goldberg R, Mazor KM. Goals-of-care decision aid for critically ill patients with TBI: Development and feasibility testing. Neurology. 2020 Jul 14;95(2):e179-e193. doi: 10.1212/WNL.0000000000009770. Epub 2020 Jun 17. PMID: 32554766; PMCID: PMC7455326. Visvanathan A, Morton S, Macraild A, Mead GE Tailored talks, a digital communication platform to support shared decision makingdecision making in severe stroke | UK Stroke Forum 2022 (epostersonline.com) Public Health England Achieving Behaviour Change. A guide for National Government accessed 12 th January 2024 UFG_National_Guide_v04.00__1___1_.pdf (publishing.service.gov.uk) Williams LS. Yilmaz EY. Lopez-Yunez AM. Retrospective Assessment of Initial Stroke Severity With the NIH Stroke Scale. Stroke 2000;31:858-862 Légaré, F., 2010 et al. Are you SURE? Assessing patient decisional conflict with a 4-item screening test, [online] available at http://www.cfp. ca/content/56/8/e308.full (and described in NHS England 2012. Measuring shared decision making ; https://www.england.nhs.uk/wp-content/uploads/2013/08/7sdm-report.pdf) Barr PJ, Thompson R, Walsh T, Grande SW, Ozanne EM, Elwyn G. The psychometric properties of CollaboRATE: a fast and frugal patient-reported measure of the shared decision makingdecision making process. J Med Internet Res2014;357:e2. doi:10.2196/jmir.3085. pmid:2438935 Bruno A, Akinwuntan AE, Lin C, Close B, Davis K, Baute V, Aryal T, Brooks D, Hess DC, Switzer JA, Nichols FT. Simplified modified rankin scale questionnaire: reproducibility over the telephone and validation with quality of life. Stroke. 2011 Aug;42(8):2276-9. doi: 10.1161/STROKEAHA.111.613273. Epub 2011 Jun 16. PMID: 21680905. Booth A, Hannes K, Harden A, Noyes J, Harris J, Tong A COREQ (Consolidated Criteria for Reporting Qualitative Studies). Book Editor(s): from Guidelines for Reporting Health Research: A User's Manual Eds Moher D, Altman DG, Schulz KF, Simera I, Wager E First published: 25 July 2014. https://doi.org/10.1002/9781118715598.ch21 Williams LS, Yilmaz Engin, Lopez-Yunez AM, Retrospective assessment of initial stroke severity with the NIH stroke scale Stroke 2000;31:858-862 Joseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: essons from the MAGIC programme. BMJ 2017;357:j1744 Himmelfarb CRD, Beckie TM, Allen LA et al Shared Decision making and Cardiovascular Health: A Scientific Statement From the American Heart Association Originally published14 Aug 2023https://doi.org/10.1161/CIR.0000000000001162Circulation. 2023;148:912–931 PLatform study for INTracerebral Haemorrhage (PLINTH) PLINTH | The University of Edinburgh accessed 11 th January 2024 Additional Declarations The authors declare no competing interests. Supplementary Files SupplementarytablesforJCP.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4343615","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":296813043,"identity":"46e65497-4616-4ca3-8519-3215389dcd78","order_by":0,"name":"Akila 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period\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage3.png","url":"https://assets-eu.researchsquare.com/files/rs-4343615/v1/48d7c253607289326e4e0bdb.png"},{"id":55768528,"identity":"2592ccf1-9b46-48b7-a562-d9b96b8ef9c4","added_by":"auto","created_at":"2024-05-02 20:31:15","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":681567,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4343615/v1/ea2ef137-5712-4f2b-9842-f7958530340d.pdf"},{"id":55767833,"identity":"b94b9618-8a5a-46ee-b811-0e38d3c285d7","added_by":"auto","created_at":"2024-05-02 20:23:14","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":14466,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementarytablesforJCP.docx","url":"https://assets-eu.researchsquare.com/files/rs-4343615/v1/c71c05b3f084472b57b3ee78.docx"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003e\u003cstrong\u003eImplementation of a shared decision making process for severe stroke-a mixed methods study\u003c/strong\u003e\u003c/p\u003e","fulltext":[{"header":"Key summary points","content":"\u003cp\u003eAim: To develop, implement and evaluate a new Shared decision-making (SDM) process for severe stroke into a regional acute stroke unit.\u003c/p\u003e\n\u003cp\u003eFindings: The co-produced new process for shared decision- making after severe stroke was not effectively implemented into clinical practice. There was no change in tube feeding, death or institutionalisation\u003c/p\u003e\n\u003cp\u003eMessage: We hope to have raised awareness of the importance of Shared decision-making including the availability of tailored information for patients and staff.\u003c/p\u003e"},{"header":"Background ","content":"\u003cp\u003eStroke is the second leading cause of death [1]. Around 50% of survivors are left disabled [2]. Stroke can cause anything from mild, quickly resolving, neurological deficits to severe persistent life-threatening deficits. After severe stroke, treatment decisions may determine whether the patient survives with severe disability or dies [3].\u003c/p\u003e\n\u003cp\u003eBecause stroke is a sudden event, patients, families and caregivers are often unprepared for being involved in making treatment decisions. Patients may not have capacity because of aphasia, cognitive impairment or impaired consciousness [4-6]. Patients and their families may be in a state of distress; and the likely extent of recovery is often uncertain [7].\u003c/p\u003e\n\u003cp\u003eShared decision making (SDM) is important because patient involvement is a fundamental right. Patients generally want information about their health condition and want to take an active role in decision making [8]. After severe stroke, patients and relatives wish for emotional support and prognostic information, even though outcome is difficult to predict. Health care professionals need to deal with uncertainty, and balance the communication of hope with realism [9]. Patients report that they do not always receive the opportunity for SDM after stroke [10]. The quality of SDM and quality of life after stroke are top priorities for research in severe stroke [11].\u003c/p\u003e\n\u003cp\u003eA 2018 Cochrane review of SDM in a range of patient groups found 87 studies, but the evidence was of low quality [8]. To the best of our knowledge there is just one trial of SDM in severe stroke in the United States; in which the feasibility of a Neurological Intensive Care Unit paper-based decision aid, for people with severe acute brain injury and stroke was assessed in 41 patients and 66 surrogate decision makers. [12,13]. The decision aid was feasible and well received in this study.\u003c/p\u003e\n\u003cp\u003eTo improve SDM after severe stroke in the UK, we developed \u0026lsquo;Tailored Talks,\u0026rsquo; a digital communication platform using Powerpoint slides that facilitates tailoring, structuring and sharing of only relevant information about stroke with patients and families [14].\u003c/p\u003e\n\u003cp\u003eOur primary aim was to co-develop and embed a process for SDM for severe stroke into the stroke service at one teaching hospital site (The Royal Infirmary of Edinburgh, Scotland) using Tailored Talks as the information source about stroke; including its effects and prognosis.\u003c/p\u003e\n\u003cp\u003eOur secondary aims were to evaluate whether the new process was effectively implemented, to explore whether it was associated with changes in processes and outcomes (death, discharge to institutional care (care home or NHS continuing care), use of tube feeding), to evaluate the views of patients, family and staff about the quality of SDM both before and after implementation of the new process, and explore whether patients/families\u0026rsquo; preferred outcome (death/severe disability) at baseline matches the actual outcome at 6 months.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThe Scotland A research ethics committee (21/SS/0044) provided ethical approval for this study. We used mixed methods: a) coproduction (months 1 to 4), b) implementation (month 6 onwards), c) audit (months 1-12), d) questionnaires (months 3-9) and e) qualitative interviews (months 6-12) with patients and relatives, and a focus group with staff. Recruitment took place between 1\u003csup\u003est\u003c/sup\u003e March 2022 and 30\u003csup\u003eth\u003c/sup\u003e November 2022. Written consent was obtained from patients (or carers where patients did not have capacity) and recorded and witnessed by the research team.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCo-production\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCo-production is a collaborative research approach that involves multiple stakeholders underpinned by three principles: (i) a structured, participatory approach designed to actively engage participants to contribute; (ii) ensuring all participant voices are heard, opinions evaluated, and appropriately acted on, and; (iii) encouraging all participants to actively contribute to the development of the SDM process for embedding Tailored Talks into practice. Our coproduction group included thirteen participants (stroke survivors, relatives, and stroke care professionals from a range of disciplines/seniorities) recruited through stroke charities and through professional networks. Recruitment was based on a voluntary opt in approach.\u003c/p\u003e\n\u003cp\u003eParticipants were invited to one of two introductory workshops. These were followed by four co-production workshops, each lasting about an hour, facilitated by at least two researchers (SM, AV and/or, AM), hosted online (due to Covid 19 restrictions) using NHS Scotland National Video Conferencing service between 18 January 2022 and 24\u003csup\u003eth\u003c/sup\u003e May 2022. Of the thirteen participants recruited, eleven of these attended the first workshop, eight the second, seven the third and six the fourth workshop.\u003c/p\u003e\n\u003cp\u003eThe topics covered in each workshop were a) overview of the aims b) how to provide tailored information about prognosis c) how to elicit family/patients views and d) how to implement the new process. Participants were invited to consider different intervention functions (education, persuasion, incentivisation, coercion, training, restriction, environmental restructuring, modelling and enablement) in their appraisal of Tailored Talks and its role in a SDM process. During the workshops, the APEASE (Acceptability, Practicability, Effectiveness, Affordability, Side-effects and safety) criteria which is related to implementation constructs were considered [15]. Workshops were recorded using an encrypted audio recorder and transcribed verbatim into Word documents. After each co-production workshop, transcripts were imported into NVivo v11 which allowed extraction of themes emerging through the data. This thematic analysis and coding was done by two researchers [AV, SM]. The data was also mapped to the APEASE criteria. Results from the first workshop informed the development of materials and discussions at the second workshop, and so on.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAudit\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBetween 1\u003csup\u003est\u003c/sup\u003e February 2022 and 31\u003csup\u003est\u003c/sup\u003e January 2023 (months 0 to 12), we extracted data on death, and place of discharge for all patients with acute stroke seen in our hospital from the Scottish Stroke Care Audit. In order to identify severe stroke (National Institute of Health Stroke Score (NIHSS) of 15 or over), clinical staff seeing patients with acute stroke agreed to record NIHSS for all patients seen during the study period. For this specific project, the audit coordinator also extracted data from the medical records on the total NIHSS score recorded by the admitting clinicians, the use of feeding (nasogastric and percutaneous gastrostomy) tubes, and the documentation of Tailored Talks (as an indicator of implementation of the SDM process). In order to ascertain if there was a statistical difference in outcomes (tube feeding, death, discharge to institutional care (care home or NHS continuing care) at 6 months) before and after implementation of the SDM pathway, we used Chi-squared tests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQuestionnaires\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThree months before implementation of the new process (1\u003csup\u003est\u003c/sup\u003e May 2022) and for three months afterwards, potential participants (acute severe stroke with NIHSS \u0026ge; 15) were identified by the research team in collaboration with ward staff. If an NIHSS had not been performed by the clinical staff, the research team approached patients who appeared clinically to have had a severe stroke; and then the project PI (GM) calculated the NIHSS retrospectively from information in the medical records.[16] Patients with capacity and next-of-kin were approached directly. If patients did not have capacity, only the next of kin was approached. We expected to recruit 100 participants over six-months, assuming that a quarter of the ~1000 patients admitted per year would have had a severe stroke.\u003c/p\u003e\n\u003cp\u003eThe four-item SURE test (4 items, each with yes/no responses) [17], which is a short version of the decisional conflict scale, and the three-item CollaboRATE measure to assess the perception of being informed and involved in decision‐making steps [18], were completed face-to-face or by telephone by research nurses at baseline, weeks 2, 4 and 8. These time points were chosen based on clinician experience that key decisions and advance care plans are often made around these times (e.g. hyperacute care, fluids, feeding tubes, \u0026rsquo;Do not attempt cardiopulmonary resuscitation\u0026rsquo;, appropriateness of treatment escalation to Critical Care and the appropriateness of using antibiotics for infection).\u003c/p\u003e\n\u003cp\u003eAt baseline, research nurses also assessed the simplified modified Rankin score (smRS) [19], and asked two open ended questions a) \u0026lsquo;If your (or your loved one\u0026rsquo;s) stroke was so severe that you (they) could no longer look after themselves and require care in a nursing home, what would be preferable to you (or your loved one): Dying comfortably from the stroke in hospital\u0026rsquo;? \u0026lsquo;Dying at home after a discharge for palliative care\u0026rsquo; or \u0026lsquo;Surviving with disability but needing long-term care in a nursing home\u0026rsquo;? and b) \u0026lsquo;As you (or loved one) are now, would you prefer \u0026lsquo;Dying comfortably from the stroke in hospital\u0026rsquo;? \u0026lsquo;Dying at home after a discharge for palliative care\u0026rsquo; or \u0026lsquo;Surviving with disability but needing long-term care in a nursing home\u0026rsquo;.\u003c/p\u003e\n\u003cp\u003eAt 6 months, we obtained data on the actual outcome (death/institutional care) and completed the smRS and asked about specific abilities (Walk (yes/No); Talk (yes/no); Eat normally (yes/No) and the anxiety/depression from the Euroquol 5D 5 level. This was done over the telephone.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQualitative interviews and focus group\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTo obtain in-depth data about the quality of SDM, AV conducted five telephone interviews between 16/11/2022 and 25/11/2022 with one patient and four bereaved relatives. Guided by the Consolidated criteria for Reporting Qualitative research [20], two reviewers (AV and SM) independently coded transcripts using NVivo and extracted themes emerging from the data. Ideally, we would have recruited more participants but we were constrained by resources. AV and AM conducted a staff focus group on 6/12/2022; participants were recruited on an \u0026lsquo;opt in\u0026rsquo; approach in response to invitation posters in staffrooms. Due to clinical constraints, only one research nurse and one physician associate attended. The discussion was audio-recorded, transcribed, coded using NVivo and AV performed the analysis\u003cstrong\u003e\u003cu\u003e.\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eCo-production\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe feedback obtained from workshops 1 to 4, ideas for implementation and what aspects of the implementation plan could be put into practice is shown in table 1.\u003c/p\u003e\n\u003cp\u003eMapping of the feedback according to APEASE criteria are shown in Table 2.\u003c/p\u003e\n\u003cp\u003eThe implementation plan was registered with our department\u0026rsquo;s Quality Improvement lead prior the official implementation date of 1\u003csup\u003est\u003c/sup\u003e August 2022. Preparatory training in Tailored Talks had been provided to staff before implementation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1. \u003c/strong\u003eOutcome of the coproduction group and implementation\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"680\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAspect of implementation\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eProposed approaches developed with the coproduction groups\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eActions taken to implement this\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eStaff awareness of SDM and Tailored Talks and how to communicate sensitively and effectively\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eAll trained staff on the stroke unit to do on-line training on sensitive and effective conversations at end of life. Patients and families should be offered the opportunity to view the brain scan.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003ca href=\"about%3Ablank\"\u003eSensitive and effective conversations at end-of-life care after acute stroke - CHSS eLearning\u003c/a\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cimg 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\" alt=\"image\" width=\"300\" height=\"300\"\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTalk to new junior doctors when they start their posts in August\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMonitor uptake of this learning module through Chest, Heart \u0026amp; Stroke Scotland\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eIdentify ambassadors (champions) on the ward-key person/people on each shift whose job it is to remind people about Shared Decision making (perhaps this person could wear a badge) and how Tailored Talks can fit with this.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eGM met with a representatives from medical staff, nursing, physiotherapy, speech and language therapy and occupational therapy to discuss the plan for SDM, encourage them to register with Tailored Talks and to do the module on sensitive and effective conversations at the end of life, and ask their teams to do the training too\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eConsultant medical staff informed about the project at three consultant meetings April, June, July 2022 and agreed to do NIHSS for all stroke patients, and asked to register for Tailored Talks\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eAV contacted the entire clinical team on the stroke unit to raise awareness of the project\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eDone (30\u003csup\u003eth\u003c/sup\u003e August 2022)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eIn May 2022, there were 10 attempts with 3 passes, and in June 2022, there were 8 attempts and 3 passes. \u0026nbsp;(note not all health care professionals would have necessarily been based at the Royal Infirmary)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eThis was not practical following discussions with the ward team\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eStaff awareness of how Tailored Talks can fit in with a process for making shared decisions\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eAll staff need to register with Tailored Talks and use them whilst talking to patients about treatment options. The TT includes a YouTube video.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003ca href=\"https://www.youtube.com/watch?v=XacDNZo6sVw\"\u003ehttps://www.youtube.com/watch?v=XacDNZo6sVw\u003c/a\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMD offered to provide individual training as needed\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eStaff poster reminded staff to use this resource.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cimg src=\"data:image/png;base64,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\" alt=\"image\" width=\"300\" height=\"300\"\u003e\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eDedicated laptop or iPad for providing Tailored Talks \u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003ePOGO digital healthcare data: 256 healthcare professionals signed up for stroke-specific content on Tailored Talks\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eOnly one consultant and registrar attended this\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePosters displayed in ward areas and staff rooms\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eThis was not possible because it could not be insured. So we accessed Tailored Talks using the ward PCs and mobile computers\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eEmotional support for families\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eFor people with severe stroke-the multidisciplinary stroke team should discuss emotional support at their weekly meetings and document as part of the MDT record whether emotional support has been considered and implemented\u003c/p\u003e\n \u003cp\u003eThe entire team including domestic staff and porters can provide kindness and supportive words\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTailored talks includes information about the psychological impact of stroke\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eWe were unable to observe whether this occurred or not due to lack of documentation\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eTailored Talks were used in only 8 patients\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eFamily awareness that Tailored Talks exist and can be used to obtain information about stroke, its consequences and treatment options\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eWe need to \u0026lsquo;create a buzz\u0026rsquo; about Tailored Talks\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003ePoster on the stroke unit for staff and patients/families \u0026nbsp;\u003c/p\u003e\n \u003cp\u003ePoster in other clinical areas e.g. Emergency department (ED), where patients might be seen initially\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eThe research team members should be responsible for creating a \u0026lsquo;buzz\u0026rsquo; and raising profile of Tailored Talks\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003ePosters were displayed in the stroke unit but not in ED\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eThere was no formal way to evaluate whether a \u0026lsquo;buzz\u0026rsquo; had been created\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eEnsuring that patients and family have the opportunity to see Tailored Talks\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eAt the weekly multidisciplinary team meeting, there needs to be a discussion and documentation about whether Tailored Talks has been used-if not and if it is felt to be potentially useful, this should be documented and then actioned\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eTailored Talks were documented only 8 times\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eContent of Tailored Talks-is it accessible?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eCurrently just slides in Powerpoint. \u0026nbsp;Pogo studios were asked to considering videos and provision of talking mats.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eThis did not occur in time for the project\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eContent of Tailored Talks-signposting towards other therapy specific information and emotional support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eAll staff on stroke unit to review Tailored Talks materials relevant to their speciality, and let MD know if further information needs to be added.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eMD was not asked to add further information\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eShared Decision making shortly after admission to the emergency department\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003eStroke outreach nurse and consultant seeing patients with stroke in the emergency department and on the stroke unit should acknowledge the shock of the diagnosis-and say that more specific information will be available when they reach the ward.\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eStroke Outreach team (who see the patients initially in the emergency department) to take into account the following:\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026bull; Some decisions need to be made very quickly-there are some slides in Tailored Talks about hyperacute care.\u003c/p\u003e\n \u003cp\u003e\u0026bull; Bite sized information is important\u003c/p\u003e\n \u003cp\u003e\u0026bull; Often the same information needs to be given several times for it to make sense as people are so often in a state of shock\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eWe did not have sufficient resources to evaluate whether this occurred or not\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"22.205882352941178%\" valign=\"top\"\u003e\n \u003cp\u003eDocumentation of the use of Tailored Talks on TRAK, as an indicator of the implementation of the new SDM process\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"51.76470588235294%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;All staff who used Tailored talks as part of shared decision making needs to document their usage on TRAK\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"26.029411764705884%\" valign=\"top\"\u003e\n \u003cp\u003eThe audit coordinator extracted data from TRAK from 1\u003csup\u003est\u003c/sup\u003e February 2022 to 31\u003csup\u003est\u003c/sup\u003e January 2023.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. \u003c/strong\u003eMapping of the feedback according to APEASE criteria\u003c/p\u003e\n\u003ctable border=\"1\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"111\"\u003e\n \u003cp\u003e\u003cstrong\u003eWorkshop number\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eWhat currently happens in SDM in severe stroke?\u003c/p\u003e\n \u003cp\u003eWhat is good about the current process? What could be improved?\u003c/p\u003e\n \u003cp\u003eWhat does current research tell us?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" width=\"111\"\u003e\n \u003cp\u003e1 Overview of aims of the co-production\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eINFORM\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Introductions\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Discuss co-production workshop(s) aims and timeline, and agreement on how the group(s) can work effectively.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Reminder of the aims of the project as a whole and the specific focus of including what SDM is.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Presentation of evidence from our previous research. Sharing existing on-line materials that are used to support SDM\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Presentation of evidence from our audit of documentation of the process of SDM.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eKNOWLEDGE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Carry out \u0026lsquo;character profile\u0026rsquo; and \u0026lsquo;character journey\u0026rsquo; activities to gather knowledge about who the users of the intervention will be and what is important to them.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Carry out \u0026lsquo;asset mapping\u0026rsquo; activity to gather knowledge about what the group members already do to facilitate SDM after severe stroke\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Work out what training for staff might be needed\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eEVALUATE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Summary of workshop led by facilitator with group members invited to contribute (including feedback and questions), outline next steps and date of next meeting.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" width=\"111\"\u003e\n \u003cp\u003e2\u0026nbsp; Designing a SDM tool-information for families and patients which includes information about stroke contained in \u0026lsquo;Tailored Talks\u0026rsquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eINFORM\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Reflections and discussion of key points identified following workshop 1.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Presentation of relevant Tailored Talks materials.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Prediction of recovery of \u0026lsquo;specific abilities\u0026rsquo;\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Identify how to improve/change these materials\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eKNOWLEDGE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Using persons derived from workshop 1 (\u0026lsquo;character profile\u0026rsquo; activity (1) and \u0026lsquo;problems and solutions\u0026rsquo; identified by the research team from \u0026lsquo;character journey\u0026rsquo;(2) and \u0026lsquo;asset mapping\u0026rsquo; (3) activities ask participants to complete \u0026lsquo;priority matrix\u0026rsquo; (4) worksheet\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Complete \u0026lsquo;opportunity card\u0026rsquo; (5) activity to allow group members to suggest their idea(s) for improving the Tailored Talks.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eEVALUATE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps and date of next meeting.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" width=\"111\"\u003e\n \u003cp\u003e3. How can we elicit patient and family views, beliefs and values?\u0026nbsp; Would a checklist of topics to be covered, be useful? How can we facilitate nurses, junior doctors and senior doctors to elicit such\u0026nbsp; conversations? What training is needed?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eINFORM\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Presentation of evidence from our previous research including an audit of communication around the time of death on a stroke unit.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Reflections and discussion of key points identified following workshop 2\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eKNOWLEDGE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Complete the \u0026lsquo;solutions in practice\u0026rsquo; activity to establish how the SDM process could be introduced (by whom, when, where) and the supporting information required to enable stroke survivors to use the intervention independently, and supported by professionals (initially), caregivers and family/friends.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eEVALUATE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps and date of next meeting.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Agree timescale and responsibility of members and researchers for contribute to the development of prototype intervention materials.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"6\" width=\"111\"\u003e\n \u003cp\u003e4. How should we implement this intervention in clinical practice? What is \u0026lsquo;quality improvement\u0026rsquo; and how do we use the QI principles to embed the process? If there is documentation, where should this be stored? Do we need implementation groups within ward settings to embed this new intervention?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eINFORM\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Review evidence related to effective implementation of SDM\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Reflections and discussion of key points identified following workshop 3.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Agree responsibility of members and researchers for specifying how the intervention should be introduced and implemented and the supporting information required to enable staff to introduce the SDM intervention and engage with patient and family in discussion about treatment options.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eKNOWLEDGE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Review prototype intervention materials developed following workshop 3.\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003eEVALUATE\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"466\"\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Participants to provide feedback on prototype materials.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Final revision of the prototype intervention, behaviour change strategies and implementation plan.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Recognition and celebration activity.\u003c/p\u003e\n \u003cp\u003e\u0026middot;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eAudit\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFrom 1\u003csup\u003est\u003c/sup\u003e February 2022 to 31\u003csup\u003est\u003c/sup\u003e January 2023, 1020 patients (502 pre- and 518 post-implementation of the SDM process) with a diagnosis of acute stroke were admitted, mean age was 73 (SD 15) and 496 (48.6%) were female. We used an iterative quality improvement methodology to increase the proportion of patients with a documented NIHSS, but improvements were not sustained (Figure 1). The overall proportion having an NIHSS assessed at admission by the clinical team was 581 (57%); of these 143 (24.6%) had a NIHSS of \u0026ge; 15. For the entire group, there was no difference tube feeding during admission, death or discharge to institutional care at 6 months, before and after implementation (table 3) The low rate of discharge to institutional care (care home or NHS continuing care) from our ward was because disabled patients were often referred on for rehabilitation in other hospitals. We did note a statistically significant reduction in death at 6 months for severe strokes but the clinical significance of this is uncertain.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3.\u003c/strong\u003e Process of care and outcome before and after implementation of the new shared decision process\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eParameter\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003ePre implementation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003ePost implementation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003eAll strokes (n=502)\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003eNIHSS \u0026ge;15 (n=68)\u003c/p\u003e\n \u003cp\u003eN(%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003eAll strokes (n=518)\u003c/p\u003e\n \u003cp\u003eN (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003eNIHSS \u0026ge;15 (n=75)\u003c/p\u003e\n \u003cp\u003eN(%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eNumber dead at 6 months after stroke onset\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003e144 (29)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e45* (66)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003e156 (30)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e37 *(49)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eDischarge to institutional care from the stroke unit at 6 months\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003e1 (0.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003e3 (0.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e2 (2.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eFeeding tube- NGT\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003e86 (17.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e21 (30.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003e87 (16.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e25 (33.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eFeeding tube- PEG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003e3 (0.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e2 (2.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003e5 (1.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e1 (1.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"27.054794520547944%\" valign=\"top\"\u003e\n \u003cp\u003eTailored talks documented during hospital admission\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"12.32876712328767%\" valign=\"top\"\u003e\n \u003cp\u003e4 (0.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"15.753424657534246%\" valign=\"top\"\u003e\n \u003cp\u003e2(2.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.061643835616437%\" valign=\"top\"\u003e\n \u003cp\u003e4 (0.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.801369863013697%\" valign=\"top\"\u003e\n \u003cp\u003e2 (2.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eNote-status (dead or alive) for 13 patients in the first six month period and for 10 patients in the second six month period is unknown for various reasons including having moved out of the area\u003c/p\u003e\n\u003cp\u003e*The only statistically significant difference between the first and second six month period was for higher % of severe stroke dead at 6 months in the first six month period (Chi square 4.12, p=0.04)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQuestionnaire data\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBetween 1\u003csup\u003est\u003c/sup\u003e May and 31\u003csup\u003est\u003c/sup\u003e October 2022 the research nurses identified 78 potentially eligible patients by discussion with the clinical staff; of these 37 had an NIHSS \u0026lt;15; five died before they could be recruited, five had no capacity, no next of kin or were not proficient in English, four declined, two were moved to another hospital/nursing home before they could be recruited and four could not be reviewed after initial contact.\u003c/p\u003e\n\u003cp\u003eOf the 21 patients (14 women, 7men), mean age 80 years old (range 41 -95) who were recruited, one was lost to follow-up before any assessments could be done. Of the remaining 20 patients, surrogate responses were obtained from next of kin/family for 18 and only two patients could answer the questions for themselves. Median NIHSS (measured at the time of stroke or calculated from record review [21]) was 23 (range 15-34). The preferred outcome at baseline is shown in table 4. At 6 months, 14 had died, three were in a nursing home and the three had been lost to follow-up.\u003c/p\u003e\n\u003cp\u003eOf the 14 participants who had died, only one had stated at baseline that they would rather survive as they were at the time than die in a nursing home; and all 14 said that they would rather die if they developed severe disability.\u003c/p\u003e\n\u003cp\u003eTable 4 summarises the responses obtained at time of consent with respect to the two questions asked.\u003c/p\u003e\n\u003cp\u003eTable 5 shows the CollaboRATE and SURE responses. We cannot draw any conclusions about participant perceptions before and after implementation or about functional status at 6 months because of the small sample size,\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4. \u003c/strong\u003ePreferred outcome at 6 months (hypothetical situation and as the patient was at the time of the interview, provided at baseline\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"39.44805194805195%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.428571428571427%\" valign=\"top\"\u003e\n \u003cp\u003eData (n=21)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.051948051948052%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"16.071428571428573%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"39.44805194805195%\" valign=\"top\"\u003e\n \u003cp\u003eQuestion\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.428571428571427%\" valign=\"top\"\u003e\n \u003cp\u003eDeath in hospital (n)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.051948051948052%\" valign=\"top\"\u003e\n \u003cp\u003eSurvival with severe disability (n)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"16.071428571428573%\" valign=\"top\"\u003e\n \u003cp\u003eLost to follow-up (n)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"39.44805194805195%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026lsquo;If your (or your relative\u0026apos;s) stroke was so severe that you/they could no longer look after yourself/themselves and need care in a nursing home, what would you prefer?\u0026rsquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.428571428571427%\" valign=\"top\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.051948051948052%\" valign=\"top\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"16.071428571428573%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"39.44805194805195%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026lsquo;As you are (or as your relative is) NOW, what would you prefer?\u0026rsquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"21.428571428571427%\" valign=\"top\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.051948051948052%\" valign=\"top\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"16.071428571428573%\" valign=\"top\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eTable 5.\u003c/strong\u003e SURE and CollaboRATE-5 scores (Mean and standard deviation*)\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.15732368896926%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"78.84267631103074%\" colspan=\"4\" valign=\"top\"\u003e\n \u003cp\u003eMean (SD) and number of respondents(N)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.119133574007222%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.855595667870038%\" valign=\"top\"\u003e\n \u003cp\u003eBaseline\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003eWeek 2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003eWeek 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003eWeek 8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.119133574007222%\" valign=\"top\"\u003e\n \u003cp\u003eCollaboRATE (maximum possible score is 12)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.855595667870038%\" valign=\"top\"\u003e\n \u003cp\u003e9.6 (12.3)\u003c/p\u003e\n \u003cp\u003eN=20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e6.8 (20.2)\u003c/p\u003e\n \u003cp\u003eN=11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e7.4 (15.0)\u003c/p\u003e\n \u003cp\u003eN=7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e5.8 (12.2)\u003c/p\u003e\n \u003cp\u003eN=5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"21.119133574007222%\" valign=\"top\"\u003e\n \u003cp\u003eSURE (maximum possible score is 4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.855595667870038%\" valign=\"top\"\u003e\n \u003cp\u003e3.7 (1.7)\u003c/p\u003e\n \u003cp\u003eN=20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e2.5 (3.3)\u003c/p\u003e\n \u003cp\u003eN=11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e2 (3.7)\u003c/p\u003e\n \u003cp\u003eN=7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"19.67509025270758%\" valign=\"top\"\u003e\n \u003cp\u003e3 (3)\u003c/p\u003e\n \u003cp\u003eN=5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*SD calculated using www.calculator.net/standard-deviation-calculator.html and set at \u0026lsquo;sample\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQualitative interviews\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFive participants were interviewed (one patient, age 73 and four relatives of deceased patients (ages of deceased patients were 89, 83, 63 and 91). Three main themes were drawn from these interviews. Full quotes are available in supplementary table 1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e1. Experience of stroke and stroke care\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn general, participants were complimentary of the care that they received on the ward. For example, P3 (Quote 1) reported how she received what she perceived to be excellent treatment.\u003c/p\u003e\n\u003cp\u003eHowever, some participants also reported how they could not remember, in retrospect, what had happened in hospital, though could not think of specific issues. For example, P2 described how she could not complain about the care received, describing the nurses as kind, but also noted that there was limited time spent with doctors, however it was not brisk. (Quote 2)\u003c/p\u003e\n\u003cp\u003eParticipants recalled feeling \u0026lsquo;shocked\u0026rsquo; and focusing on implications of the event of the stroke and being concerned about having another stroke, especially when they were not of medical background themselves.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2. Diagnosis and discussions about stroke and treatment, involvement in decision making.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere was variability in how different participants felt they were involved in discussions about the diagnosis, prognosis and treatment options.\u003c/p\u003e\n\u003cp\u003eFour participants reported that they were kept up to date with the patients\u0026rsquo; progress, clarity was provided about decisions, and that there was a sympathetic and supportive ethos. For example, P1 recalled how she had had a meeting with different doctors and was involved in making decisions about tube feeding, which she found easy to make having seen the patient and interpreting his actions as a knowledge of the patients\u0026rsquo; preferences. (Quote 3)\u003c/p\u003e\n\u003cp\u003eHowever, many (four out of five) also reported how they were either not in a position to make choices and/or ask questions about treatment (due to shock of the diagnosis or being too ill) or that they were not aware that there were choices to be made (because of the patients\u0026rsquo; co-morbid condition or they went with the doctors\u0026rsquo; advice) For example, P2 recalled how shocked she had felt that the patient had had a stroke and therefore trusted the doctors to make \u0026lsquo;the best choices\u0026rsquo;. (Quote 4) Similarly P4 reported how there was a discussion about the placement of a feeding tube but this was agreed not to be attempted in view of the families\u0026rsquo; interpretation of what the patient would have wanted. (Quote 5) However one participant reported how having a structure and timeline on these discussions would be helpful. (Quote 6)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3. Provision of information\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe majority of participants (four out of five) reported how they wished for information from health care professionals to help them understand the situation, and that viewing the CT scan was helpful to their understanding, especially when the prognosis of the patient may be poor. For example, P1 reported how she wanted \u0026lsquo;\u0026rsquo;straight up information\u0026rsquo;\u0026rsquo; and although \u0026lsquo;\u0026rsquo;scan was shocking, it helped her understand\u0026rsquo;\u0026rsquo;. Similarly P2 reported how she \u0026lsquo;\u0026rsquo;would have liked to\u0026rsquo;\u0026rsquo; see her family members\u0026rsquo; scan to understand prognosis better.\u003c/p\u003e\n\u003cp\u003eParticipants reported varying need for amount and type of information and this appeared to relate to how old the family member admitted with a stroke was. For example, P3 discussed how she \u0026lsquo;\u0026rsquo;didn\u0026rsquo;t really need any information but maybe if younger patient may need more information\u0026rsquo;\u0026rsquo;. P4 had a similar response and reported that in her circumstance, \u0026lsquo;\u0026rsquo;don\u0026rsquo;t think it would have helped anyway- more useful if the patient was younger\u0026rsquo;\u0026rsquo;.\u003c/p\u003e\n\u003cp\u003eThree out of five participants felt that written information (e.g. leaflet) with pictures were useful and some looked up information in other sources (e.g. online). For example, P1 recalled how leaflets were provided, and that it was \u0026lsquo;\u0026rsquo;helpful to have pictures in the leaflets that were provided\u0026rsquo;\u0026rsquo; but also that they were looking for alternative sources of information to further confirm their understanding of the situation; \u0026lsquo;\u0026rsquo;we looked up YouTube anyway\u0026rsquo;\u0026rsquo;.\u003c/p\u003e\n\u003cp\u003eHowever the timing of information provision was raised by several participants who felt that this should be given later on in the patients\u0026rsquo; journey when they were less shocked and therefore able to absorb information better. (Quote 7)\u003c/p\u003e\n\u003cp\u003eIn terms of delivery of information, face-to-face was considered a good approach \u0026ndash; having things explained in person, rather than over the phone or through a leaflet. P4 reported how he felt that the \u0026lsquo;personal touch\u0026rsquo; is always the best.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTailored talks as a mode of information provision\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOnly one participant had the experience of receiving information through Tailored Talks. P2 recalled how this information was given, and reported how she felt that it was a shock to hear about the prognosis at that stage but felt that looking at it later would have been helpful. (Quote 8) Three out of the four remaining participants, who had not received Tailored Talks, felt that this would have been useful to them when given at the \u0026lsquo;\u0026rsquo;right time\u0026rsquo;\u0026rsquo;. For example, P3 expressed how he thought that information provided through Tailored Talks would have been a good idea especially with pictures but this would be best given later on in the patients\u0026rsquo; journey. (Quote 9) Similarly P5 expressed how such information would have been very useful to her and her family. (Quote 10)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStaff focus group.\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFive participants were initially recruited but only two could attend due to clinical service pressures. Due to lack of resources, only one reviewer (AV) analysed the data. Full quotes are in supplementary table 2.\u003c/p\u003e\n\u003cp\u003eThere were two main themes drawn from the discussions:\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e1. Experience of Tailored talks and its use\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants felt that Tailored Talks was a good source of information and often used Tailored Talks as an educational resource (Quote 1)\u003c/p\u003e\n\u003cp\u003eDrawing on their own experience and observation of their medical colleagues, they have used Tailored Talks on the ward for medication discussions which were termed as \u0026lsquo;\u0026rsquo;low stake conversations\u0026rsquo;\u0026rsquo; when compared to discussions involving feeding or end of life which were felt to be \u0026lsquo;\u0026rsquo;high stake conversations.\u0026rsquo;\u0026rsquo; (Quote 2) On further questioning, the participants alluded to \u0026lsquo;\u0026rsquo;high stake conversations\u0026rsquo;\u0026rsquo; as those where the decisions were likely to involve discussions around death or severe disability, which they did not feel comfortable at their level of medical training.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2. Barriers to TT use.\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ea) \u003cstrong\u003eThe lack of time\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants felt that on a busy stroke ward, they were unable to justify extra time to make a talk to deliver. (Quote 3) The lack of equipment (iPads or computers on wheels) on the ward was reported as another barrier.\u003c/p\u003e\n\u003cp\u003eb) \u003cstrong\u003eInformation that staff felt may not be patient friendly\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants also reflected on situations where when they had delivered Tailored Talks to patients or their families; and in these situations, the participants were told that the recipients had felt that this was \u0026lsquo;\u0026rsquo;too much\u0026rsquo;\u0026rsquo; and \u0026lsquo;\u0026rsquo;too medical\u0026rsquo;\u0026rsquo; for them. (Quote 4)\u003c/p\u003e\n\u003cp\u003ec) \u003cstrong\u003eA perceived lack of patient contact/ human touch\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants also drew on their own experiences and from witnessing colleagues in similar situations, that using technology to divulge information took away from eye contact. (Quote 5)\u003c/p\u003e\n\u003cp\u003ed) \u003cstrong\u003eLack of leadership\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe lack of consultant usage of Tailored Talks was reported to be a major barrier for the lack of its use by other members of the team. (Quote 6)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study has many strengths; it was a mixed methods study to develop and implement a SDM process. We made clear comparisons of various parameters using a multi modal approach (audit, questionnaire study, qualitative interviews and focus group) before and after the implementation of this process. Our SDM process incorporated all the key elements recommended by the American Heart Association for cardiovascular SDM except for \u0026lsquo;decision coaches\u0026rsquo; [22]. We conducted training and education for patients, families and staff to alert them of the importance of SDM and attempted to empower and enlighten all relevant individuals in being involved in this process.\u003c/p\u003e\n\u003cp\u003eHowever, despite using coproduction methodology to develop a new SDM process and implementation plan, our audit of \u0026gt;1000 patients suggests that the process was not effectively implemented and there were no changes in death, discharge to institutional care or tube feeding at 6 months for the entire group.\u003c/p\u003e\n\u003cp\u003eWe faced several challenges in the implementation of this process; specifically, with recruitment, measuring change over time and financial/time constraints of researchers and staff.\u003c/p\u003e\n\u003cp\u003eWe recruited only 21 patients to the questionnaire study; this was probably because only just over half of patients had an NIHSS recorded by the clinical staff, some patients died before they could be consented and some declined. The staff focus group was under-represented due to clinical constraints.\u003c/p\u003e\n\u003cp\u003eAlthough we demonstrated feasibility of the SURE and CollaboRATE questionnaires, because the sample size fell over time, we cannot comment on longitudinal changes. There were insufficient data to determine whether the scores were different pre-and post-implementation.\u003c/p\u003e\n\u003cp\u003eStaff group opinions were that there had been insufficient time to use Tailored Talks, that the materials were not \u0026lsquo;patient friendly\u0026rsquo; and that there had been a lack of consultant leadership.\u003c/p\u003e\n\u003cp\u003eDue to financial constraints, when implementing the SDM process we were not able to identify \u0026lsquo;champions\u0026rsquo; on the ward, or provide iPads, as advised by our coproduction group.\u003c/p\u003e\n\u003cp\u003eWhilst we adopted a rigorous qualitative approach towards our interviews, due to limited resources, we were only able to interview five participants. Ideally, we would have purposefully sampled participants and performed more interviews to further ensure that data saturation had been achieved. However, from the interviewer and reviewers\u0026rsquo; experience, even from the few interviews, participants seemed to be iterating similar views, and therefore the data we obtained from this, we felt, was a good representation of our study population. Themes obtained were consistent with previous studies (experience of stroke and stroke care, diagnosis and discussions about stroke and treatment, involvement in decision making and provision of information [4,6,7]. The range of participants\u0026rsquo; responses were wide, perhaps reflecting a wide range of values, beliefs, and prior experiences (of medical care and illness), differences in stroke characteristics (e.g. severity and neurological deficits), and variation in how different health care professionals approached SDM.\u003c/p\u003e\n\u003cp\u003eOur study has highlighted several challenges in the implementation of a SDM process for severe stroke within the stroke unit. It is possible that some of these challenges were related to the timing of implementation; this was just post COVID when there were massive service pressures on the National Health Service. Our findings and observations corroborate with findings from the MAGIC (making good decisions in collaboration) programme. [23] Specifically, changing preferences and opinions of patients and caregivers, clear clinical demands faced by clinical teams with other competing priorities thus reducing their ability to participate in SDM and the challenge of measuring sustained learning from education and training sessions. It is also possible that clinicians felt that they were already practising SDM and therefore being reluctant to a change in process.\u003c/p\u003e\n\u003cp\u003eHad the new process been successfully implemented into practice, our next step would have been a feasibility randomised trial, likely a step wedged design. Instead, consideration needs to be given to the barriers and decide whether we should refine our SDM process and attempt implementation again. Tailored Talks are currently being used in NHS Lothian to counsel patients about anticoagulation for atrial fibrillation, for post-Covid 19 care and to recruit patients to a platform trial of intracerebral haemorrhage [24]. Experience in these areas will inform our next steps.\u003c/p\u003e\n\u003cp\u003eIn summary, our new co-produced process for SDM after severe stroke incorporating Tailored Talks was not effectively implemented into practice and there was no change in measured outcomes. However, we hope to have raised awareness amongst patients, families and staff of the importance of SDM in severe stroke and the availability of educational materials through Tailored Talks.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe are grateful to patients and families who participated, the members of the Coproduction group, the clinical staff involved in the management of the patients with severe stroke, and the research nurses Jessica Crossan, Mairi MacDonald, Sarah Risbridger for recruiting patients.\u003c/p\u003e\n\u003cp\u003eJessica Crossan, Mairi MacDonald, Sarah Risbridger (research nurses). Edinburgh and Lothian Health Foundation Reference 1339 supported this work\u003c/p\u003e\n\u003cp\u003eThis work has not been published elsewhere, nor is it under consideration for publication anywhere else. All authors contributed to the study conception and design. Material preparation, data collection and analysis was performed by Akila Visvanathan, Gillian Mead, Sarah Morton, Allan MacRaild, Polly Black and Sophie Gilbert. First draft of the manuscript was written by Akila Visvanathan and all authors have commented on versions of the manuscript. All authors have reviewed and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAuthors have not declared any competing interests\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eFeigin VL, Brainin M, Norrving B, et al. World Stroke Organization (WSO): Global Stroke Fact Sheet 2022. \u003cem\u003eInternational Journal of Stroke\u003c/em\u003e. 2022;17(1):18-29. doi:10.1177/17474930211065917\u003c/li\u003e\n \u003cli\u003eDonkor ES. Stroke in the 21\u003csup\u003est\u003c/sup\u003e Century: A Snapshot of the Burden, Epidemiology, and Quality of Life. Stroke Res Treat. 2018 Nov 27;2018:3238165. doi: 10.1155/2018/3238165. PMID: 30598741; PMCID: PMC6288566.\u003c/li\u003e\n \u003cli\u003eMead GE Shared decision making in older people after severe stroke. Age Ageing in press\u003c/li\u003e\n \u003cli\u003eKendall M, Cowey E, Mead G, Barber M, McAlpine C, Stott DJ, Boyd K, Murray SA. Outcomes, experiences and palliative care in major stroke: a multicentre, mixed-method, longitudinal study. CMAJ. 2018 Mar 5;190(9):E238-E246. doi: 10.1503/cmaj.170604. PMID: 29507155; PMCID: PMC5837872.\u003c/li\u003e\n \u003cli\u003eVisvanathan A, Dennis M, Mead G, Whiteley WN, Lawton J, Doubal FN. Shared decision making after severe stroke\u0026mdash;How can we improve patient and family involvement in treatment decisions? International Journal of Stroke. 2017;12(9):920-922. doi:10.1177/1747493017730746\u003c/li\u003e\n \u003cli\u003eVisvanathan A., Mead GE, Dennis M, Whiteley W, Doubal F, Lawton J Maintaining hope after a disabling stroke: A longitudinal qualitative study of patients\u0026rsquo; experiences, views, information needs and approaches towards making treatment decisions. Plos one 2019; September . https://doi.org/10.1371/journal.pone.0222500\u003c/li\u003e\n \u003cli\u003eVisvanathan, A., Mead, G.E., Dennis, M. \u003cem\u003eet al.\u003c/em\u003e The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study. \u003cem\u003eBMC Med Inform Decis Mak\u003c/em\u003e \u003cstrong\u003e20\u003c/strong\u003e, 98 (2020). https://doi.org/10.1186/s12911-020-01137-7\u003c/li\u003e\n \u003cli\u003eL\u0026eacute;gar\u0026eacute; F, Adekpedjou R, Stacey D, Turcotte S, Kryworuchko J, Graham ID, Lyddiatt A, Politi MC, Thomson R, Elwyn G, Donner‐Banzhoff N. Interventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews 2018, Issue 7. Art. No.: CD006732. DOI: 10.1002/14651858.CD006732.pub4. Accessed 11 January 2024\u003c/li\u003e\n \u003cli\u003eDoubal F, Cowey E, Bailey F, et al. 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PMID: 32554766; PMCID: PMC7455326.\u003c/li\u003e\n \u003cli\u003eVisvanathan A, Morton S, Macraild A, Mead GE Tailored talks, a digital communication platform to support shared decision makingdecision making in severe stroke | UK Stroke Forum 2022 (epostersonline.com)\u003c/li\u003e\n \u003cli\u003ePublic Health England Achieving Behaviour Change. A guide for National Government accessed 12\u003csup\u003eth\u003c/sup\u003e January 2024 UFG_National_Guide_v04.00__1___1_.pdf (publishing.service.gov.uk)\u003c/li\u003e\n \u003cli\u003eWilliams LS. Yilmaz EY. Lopez-Yunez AM. Retrospective Assessment of Initial Stroke Severity With the NIH Stroke Scale. Stroke 2000;31:858-862\u003c/li\u003e\n \u003cli\u003eL\u0026eacute;gar\u0026eacute;, F., 2010 et al. Are you SURE? Assessing patient decisional conflict with a 4-item screening test, [online] available at http://www.cfp. ca/content/56/8/e308.full (and described in NHS England 2012. Measuring shared decision making ; https://www.england.nhs.uk/wp-content/uploads/2013/08/7sdm-report.pdf)\u003c/li\u003e\n \u003cli\u003eBarr PJ, Thompson R, Walsh T, Grande SW, Ozanne EM, Elwyn G. The psychometric properties of CollaboRATE: a fast and frugal patient-reported measure of the shared decision makingdecision making process. J Med Internet Res2014;357:e2. doi:10.2196/jmir.3085. pmid:2438935\u003c/li\u003e\n \u003cli\u003eBruno A, Akinwuntan AE, Lin C, Close B, Davis K, Baute V, Aryal T, Brooks D, Hess DC, Switzer JA, Nichols FT. Simplified modified rankin scale questionnaire: reproducibility over the telephone and validation with quality of life. Stroke. 2011 Aug;42(8):2276-9. doi: 10.1161/STROKEAHA.111.613273. Epub 2011 Jun 16. PMID: 21680905.\u003c/li\u003e\n \u003cli\u003eBooth A, Hannes K, Harden A, Noyes J, Harris J, Tong A COREQ (Consolidated Criteria for Reporting Qualitative Studies). Book Editor(s): from Guidelines for Reporting Health Research: A User\u0026apos;s Manual Eds Moher D, Altman DG, Schulz KF, Simera I, Wager E First published: 25 July 2014. https://doi.org/10.1002/9781118715598.ch21\u003c/li\u003e\n \u003cli\u003eWilliams LS, Yilmaz Engin, Lopez-Yunez AM, Retrospective assessment of initial stroke severity with the NIH stroke scale Stroke 2000;31:858-862\u003c/li\u003e\n \u003cli\u003eJoseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: essons from the MAGIC programme. BMJ 2017;357:j1744\u003c/li\u003e\n \u003cli\u003eHimmelfarb CRD, Beckie TM, Allen LA et al Shared Decision making and Cardiovascular Health: A Scientific Statement From the American Heart Association Originally published14 Aug 2023https://doi.org/10.1161/CIR.0000000000001162Circulation. 2023;148:912\u0026ndash;931\u003c/li\u003e\n \u003cli\u003ePLatform study for INTracerebral Haemorrhage (PLINTH) PLINTH | The University of Edinburgh accessed 11\u003csup\u003eth\u003c/sup\u003e January 2024\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"ca02a04b-e454-45a5-802b-a56fc1f228dc","identifier":"10.13039/100010527","name":"NHS Health Scotland","awardNumber":"Edinburgh and Lothian Health Foundation Reference 1339","order_by":0}],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"decision-making, implementation pathway, communication, stroke, capacity, consent","lastPublishedDoi":"10.21203/rs.3.rs-4343615/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4343615/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003ePurpose\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eClinical decisions made early after stroke can make the difference between survival with disability or death. We aimed to develop, implement and evaluate a new Shared decision making (SDM) process for severe stroke into a regional 36 bedded stroke unit.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe developed the process through four coproduction workshops, attempted its implementation then evaluated its impact on death, discharge to institutional care (care home or NHS continuing care) and tube feeding at 6 months. We also explored patients,’ families’ and staff views about SDM.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEleven people (staff and people with lived experience of stroke) attended the first co-production workshop, eight the second, seven the third and six the fourth. The new SDM process incorporated Tailored Talks (a digital platform with information about stroke) and an implementation plan.We implemented this process on 1\u003csup\u003est\u003c/sup\u003e August 2022. Only eight out of 1020 patients received Tailored Talks (four before and four after implementation). For the entire group there was no change in tube feeding, discharge to institutional care or death. The proportion of people with severe strokes dead at six months was lower after implementation (p=0.04), though the significance of this is uncertain. Staff interviews suggested that insufficient time, lack of a ‘human touch’ and inadequate leadership explained the lack of implementation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOur co-produced SDM process was not effectively implemented into a stroke unit and there was no impact on the use of tube feeding, discharge to institutional care or death at six months.\u003c/p\u003e","manuscriptTitle":"Implementation of a shared decision making process for severe stroke-a mixed methods study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-05-02 20:23:10","doi":"10.21203/rs.3.rs-4343615/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0ee9a0b7-9b98-4c18-b46c-09e9edc083d0","owner":[],"postedDate":"May 2nd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":31307286,"name":"Hospital Medicine"}],"tags":[],"updatedAt":"2024-05-02T20:23:10+00:00","versionOfRecord":[],"versionCreatedAt":"2024-05-02 20:23:10","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4343615","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4343615","identity":"rs-4343615","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}