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 1st 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
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Proposed approaches developed with the coproduction groups
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Actions taken to implement this
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Staff awareness of SDM and Tailored Talks and how to communicate sensitively and effectively
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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.
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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 (30th 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
.
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Staff awareness of how Tailored Talks can fit in with a process for making shared decisions
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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
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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
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Emotional support for families
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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
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We were unable to observe whether this occurred or not due to lack of documentation
Tailored Talks were used in only 8 patients
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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
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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
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Posters were displayed in the stroke unit but not in ED
There was no formal way to evaluate whether a ‘buzz’ had been created
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Ensuring that patients and family have the opportunity to see Tailored Talks
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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
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Tailored Talks were documented only 8 times
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Content of Tailored Talks-is it accessible?
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Currently just slides in Powerpoint. Pogo studios were asked to considering videos and provision of talking mats.
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This did not occur in time for the project
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Content of Tailored Talks-signposting towards other therapy specific information and emotional support
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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.
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MD was not asked to add further information
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Shared Decision making shortly after admission to the emergency department
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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
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We did not have sufficient resources to evaluate whether this occurred or not
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Documentation of the use of Tailored Talks on TRAK, as an indicator of the implementation of the new SDM process
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All staff who used Tailored talks as part of shared decision making needs to document their usage on TRAK
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The audit coordinator extracted data from TRAK from 1st February 2022 to 31st January 2023.
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Table 2. Mapping of the feedback according to APEASE criteria
Workshop number
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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?
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1 Overview of aims of the co-production
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INFORM
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· 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.
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KNOWLEDGE
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· 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
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EVALUATE
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· Summary of workshop led by facilitator with group members invited to contribute (including feedback and questions), outline next steps and date of next meeting.
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2 Designing a SDM tool-information for families and patients which includes information about stroke contained in ‘Tailored Talks’
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INFORM
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· 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
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KNOWLEDGE
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· 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.
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EVALUATE
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· Summary of workshop lead by facilitator with group members invited to contribute (incl. feedback and questions), outline next steps and date of next meeting.
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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?
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INFORM
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· 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
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KNOWLEDGE
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· 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.
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EVALUATE
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· 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.
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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?
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INFORM
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· 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.
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KNOWLEDGE
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· Review prototype intervention materials developed following workshop 3.
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EVALUATE
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· 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.
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Audit
From 1st February 2022 to 31st 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
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Pre implementation
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Post implementation
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All strokes (n=502)
N (%)
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NIHSS ≥15 (n=68)
N(%)
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All strokes (n=518)
N (%)
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NIHSS ≥15 (n=75)
N(%)
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Number dead at 6 months after stroke onset
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144 (29)
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45* (66)
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156 (30)
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37 *(49)
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Discharge to institutional care from the stroke unit at 6 months
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1 (0.2)
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0 (0.0)
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3 (0.6)
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2 (2.7)
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Feeding tube- NGT
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86 (17.1)
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21 (30.9)
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87 (16.8)
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25 (33.3)
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Feeding tube- PEG
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3 (0.6)
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2 (2.9)
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5 (1.0)
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1 (1.3)
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Tailored talks documented during hospital admission
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4 (0.8)
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2(2.9)
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4 (0.8)
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2 (2.7)
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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 1st May and 31st 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
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Data (n=21)
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Question
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Death in hospital (n)
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Survival with severe disability (n)
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Lost to follow-up (n)
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‘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?’
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17
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3
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1
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‘As you are (or as your relative is) NOW, what would you prefer?’
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13
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7
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1
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Table 5. SURE and CollaboRATE-5 scores (Mean and standard deviation*)
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Mean (SD) and number of respondents(N)
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Baseline
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Week 2
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Week 4
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Week 8
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CollaboRATE (maximum possible score is 12)
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9.6 (12.3)
N=20
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6.8 (20.2)
N=11
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7.4 (15.0)
N=7
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5.8 (12.2)
N=5
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SURE (maximum possible score is 4)
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3.7 (1.7)
N=20
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2.5 (3.3)
N=11
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2 (3.7)
N=7
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3 (3)
N=5
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*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)