‘What are community stroke patients’ experiences of a Secondary Stroke Prevention package offered by a Community Neurological Rehabilitation Team

and their views on how it could be improved?’

Work Based Project/Service Evaluation April 2017

Karen Jephson Community Neuro Rehab Nurse CNRT Brighton and Hove

Sussex Community NHS Foundation Trust

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Stroke and Secondary Stroke Prevention (SSP)

• Stroke continues to be one of the worlds biggest causes of death and disability 1,2

• At least ¼ of all strokes are believed to be a secondary 3

• UK – over 100 000 people have a stroke every year 1 – £9 billion costs

• Only 4% of total NHS budget – preventative programmes 4

• 64% of stroke victims live in fear of another stroke happening5

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Non-modifiable

• Age

• Ethnicity

• Gender

• Family History

• Long Term Conditions (e.g. AF diabetes)

Modifiable

• Blood pressure

• Smoking

• Dietary intake/weight

• Exercise

• Stress

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Secondary Stroke Prevention

• Assume our patients know what risk factors are

BUT…

• Lack of risk awareness Only 30% of post stroke patients could name a risk factor 6

• Being aware of risk factors doesn’t equate to wanting /being able to do anything about it 6,7

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What do we know works well for Secondary Stroke Prevention?

• Advantages of starting asap 8

• Repetition of information/reinforcement , using multiple methods - at the right time 9

• Individualised /interactive information can make people feel more empowered and in control10,11,12

• Importance of including family 10,12

• Group based interventions /discussions10,12

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Brighton and Hove CNRT Secondary Stroke Prevention Package – what is it?

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• Flexible Approach • What do they already know?

• Explanation of stroke type and prevention - diagrams, anatomical models

and leaflets 13-15

• Assessment form – enabling patients to identify own potential risk factors • A plan to decide which risk factor would like to ‘tackle’ first / how? • Information leaflet - sustaining any potential changes

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The aim

To find out patients’ experiences of a Secondary Stroke Prevention Package and if it was of any use

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Methodology

• Qualitative research with patients who had had their stroke within six months Interpretive approach was used as meaning was deduced from data

• A convenient sample of 10 participants (between September - November 2016)

• Participants were asked their experience of receiving the package via a semi structured Interview, digitally recorded, transcribed and thematically analysed

• Lasted up to 35minutes

• Patients are our ‘experts by experience’ 16

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Intervention

• Potential participants were contacted – in my evaluator role discussed the project in detail and left an information pack with them - if they understand and were happy to take part they were then asked to sign a consent form

• SSP package was offered to the participant by CNRT nurse on the same visit or another agreed date. Following the final session (no longer than 3 weeks) on another agreed date the semi-structured interview took place

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The participants

Participant Gender Age Lives alone Time since

stroke

Number of SSP sessions

pilot M 63y N 5 months 2

1 F 63y N 4 months 3

2 F 47y N 6 months 6

3 F 72y y 1.5 months 3

4 M 82y N 2 months 2

5 F 48y Y 3 months 2

6 M 74y Y 3 months 3

7 F 76y Y 4 months 2

8 F 75y N 2 months 1

9 M 76y N 1 month 3

10 M 50y N 2 months 3

Intervention – questions asked

• Can you talk me through how the health promotion sessions have been for you?

• What are your views on any of the advice you were offered?

• What was most useful?

• What was used or said that was not helpful for you?

• You haven’t mentioned ….

• How have the sessions made you think about your lifestyle?

• Have you made or thought about any positive changes?

• What were the barriers?....

• How confident are you in ‘sticking’ to them?

• If you hadn’t had the sessions how would things be different?

• Can you think of any recommendations for improvements?

• What else would you have liked included in the sessions?

• Is there anything else that you would like to add?

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Results

Five main themes emerged

• Educational

Increased understanding, anatomical models helped ‘take on board’ what had happened. The adaptability of the SSP package

• Encouraging and “chivvying”

Reassurance, reinforcement and clarification

• Empowering

Allowed ‘ownership’ of change and readiness to move on

• Support

Disbelief and shock of stroke/life adjustment – real fear of recurrence

• Right time Right place

Appreciation of SSP package, more receptive at home, valued input, welcomed delivery by someone with post-stroke knowledge that valued importance of empowerment

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Participant quotes

• P5“If I hadn't had the input I don’t think that I would have made these changes – I might have said that I would have changed – but might not have actually”

• P2“It really got me thinking about what I was eating”

• P4“Because pub measures aren't what you pour at home”

• P6 “I wouldn’t have been thinking about any of that … esp that 5 a day thing so definitely its made a difference”

• P7 “I know I have to change else I'm asking for trouble”

• P3 “Its very different when they TELL YOU in hospital but you just come home and think ‘oh well’”

• P4 “ I don’t think you can do much better - you are coming into peoples homes and encouraging them”

Additional findings

• Participants‘ only mentioned a few minor improvements

• Information on food portion sizes

• Secondary stroke statistic information

• ‘looking into’ participants food cupboards

• ‘Revisiting’ offering stroke prevention– if patient had initially declined ‘timing’

• The majority of participants welcomed the idea of incorporating an iPad into the package and of having access to a stroke follow on group

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Conclusion

• The SSP package helped and made a difference

• Many issues raised were universal

• How and when SSP package was delivered was equally as important as its contents

• Participants wanted to know ‘what had happened to them?’ and how could they help themselves and welcomed support and reassurance

• The SSP package enabled and empowered participants to make/think about making positive lifestyle changes – despite having suffered a sudden life event

• The SSP package had the flexibility to reach a wide audience – depending on needs at a time and place that was right

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Recommendations and implication of findings

Insight gained reinforces the importance of addressing SSP needs for post-stroke patients

• Continue to use creatively in its current format which offers -

– Flexibility as its key to success – when and how its delivered are crucial depending on where post- stroke patients ‘are’

• To re-ask patients’ about stroke prevention not just once – if they decline

• To ‘re-visit’ any behaviour change if possible at routine 6-8 month post-stroke review

• Develop a separate project looking specifically at food educational tools/food intake – as all participants identified ‘What I eat’ as a risk factor that they wanted to address

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What next for The SSP package?

• Disseminate findings to other SCFT CNRT teams, local acute stroke nurse colleagues and nationwide stroke nurse colleagues (UK forum) and participants'

• June 2017 - Dietary intake project suggestion being taken forward by RCN ‘Celebrating Nursing Practice’

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References

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Thank you for coming along and listening

• Questions?

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