This document summarizes a study exploring the experiences of stroke survivors and their carers in managing medications after being discharged from the hospital. It finds that they face various practical challenges with dexterity, swallowing, cognition and lack of knowledge about how to take medications. They also have motivational issues due to the preventative nature and lack of evidence the medications are working. Strategies used to manage medications include dosette boxes, reminders, and support from carers. The conclusion calls for improved patient education before discharge and support for those living alone or on multiple medications.

1. Medication adherence post-stroke:
An exploratory study of stroke survivors’ and carers’
experiences of managing medication at home early
after discharge.
Jo Gibson, Jackie Coupe, and Caroline Watkins
College of Health and Wellbeing
University of Central Lancashire
jgibson4@uclan.ac.uk

2. Background
• Around a third of stroke survivors go on to have a subsequent stroke
• Strict adherence to all secondary prevention recommendations could
reduce the risk of stroke recurrence by around 80% (Hackam and
Spence 2007).
• Secondary prevention also addresses risk of cardiac events

3. • 2000 (1st edition) –
• 2 pages on secondary
prevention (including
references!)
• 2012 (4th edition ) –
• 18 pages
National Clinical Guideline for Stroke

4. Why don’t people take their tablets?
• Poor post-stroke medication adherence is a common and clinically
important problem
• Trials of interventions to improve adherence have had limited
effectiveness (Lager at al, 2014)
• Trials have not been based on a comprehensive understanding of the
factors which influence adherence.

5. Poor
adherence
Practical
barriers
Complex
regime
Motivational
barriers

6. • Risk of recurrence is highest early after stroke -
important to identify and support patients before
discharge
• But may be too little, too late (e.g. review at 6
months!)
• Stroke patients’ and carers’ concerns and difficulties
are poorly understood
Early after stroke…

7. • To explore stroke survivors’ and carers’ experiences of
managing medication, including difficulties and
strategies adopted, early after discharge
Aim of study

8. Method - recruitment
• Stroke survivors discharged from acute or rehab stroke unit (< one
month)
• Carer participation if wished
• Eligibility: discharged to own home; not for end-of life care; any level
of post stroke disability including cognitive impairment and/or
aphasia
• Approached in hospital shortly before discharge to ‘opt-in’ to contact
• Contacted by research team in first 2 weeks after discharge

9. Method – data collection
• Individual semistructured interviews
• Explored experiences of managing medication post-stroke
Practical issues
Motivational issues
Strategies

10. Challenges to recruitment!
Interviewer: Firstly I’d just like to know about your experiences of
taking medication after you came home after your stroke
Participant: it’s not been a problem really at all
I: not been too much of a problem
P: no
I: okay

11. But then …
• When I think about it now we did have a bit of a problem when I first
came home, because they gave me all my medications which was a
huge great big bag, and we got home, I carried on with my tablets, we
took, I don’t know how, but one of the boxes was left because me
tablets were already done, because of that week’s tablets were
already there and set out (in the tray) …I don’t remember them
saying you’re on two lots of tablets…my head was all over the place
at that stage, they might have said it, and it was only when my
husband came to do my tablets up again that he found the
clopidogrel tablet box (so that was a period of…) probably about
four days

12. Participants
• 9 patients (6 F)
• 3 carers (1F)
• Aged 52-76
• 6 patients lived with spouse/partner
• 7 had first stroke / 2 had recurrent stroke
• Typical length of stay from 2-4 days (range 1-31)

13. Medications
• Typically on 5-6 different medications post-discharge (range 2 to 13)
• All but one had a change to their medication regime (typically 2 new
medications)
• 3 were newly commenced on warfarin; one on dabigatran

14. Practical issues
Motivational
issues
Solutions
Themes

15. • ‘I’m one–handed, and trying to get it out and not have
the tablet go at 90 mph across the floor’ (male, aged
60, lives alone)
• There’s one or two on’t floor occasionally…then I have
to find out when it was from... sometimes you’ve got
to miss that particular one’ (husband of female, aged
55, uses ‘blister pack’)
Practical issues - dexterity

16. Practical issues - swallowing
• None had persistent dysphagia
• But some had had transient swallowing problems earlier…
• It’s a big one, it takes a lot of water to get it down’ (female, aged 53,
lives with husband)

17. Practical issues - cognition
• Cognitive impairment / temporary turmoil post-discharge!
• ‘I was still a bit confused with going home the day before’ (Female,
aged 53, lives with husband)
• ‘You do forget… (you say) did I take that?’ (husband of female, aged
54

18. Practical issues - knowledge
• Information given in hospital focused on the purpose of medication,
rather than on the practicalities of how to take it
• ‘they assumed that if I needed any help I would have asked’ (male,
aged 76, lives alone)

19. • ‘what I perceived as the seriousness of the condition…I
just had to do anything I could to make sure I wasn’t
going before my time…’ (male, aged 52, lives with
wife)
• ‘I hope it’s doing me some good… but I don’t know if it
is...because I feel fine’ (female, aged, 77, lives with
husband)
Motivational issues –preventive nature

20. Motivational issues – concerns about
medication
• ‘ there’s been a lot in the paper about statins and side effects’
(female, aged 77, lives with husband)
• ‘I’ve no concerns, no side effects’ (male, aged 76, lives alone)
• ‘I’d like to be taking a lot less really… there’s too much, it gets on your
nerves a bit’ (female, aged 55, lives with husband, 13 different
medications) …’It’s a reminder that you’re not well’ (husband)

21. Warfarin – you can see it working!
• “Obviously if it’s thinning the blood from the blood counts (INR), it’s
doing what it’s supposed to be doing … I have a look when they do it,
I keep me eye on everything, but yeah I mean as long as that blood
count now is what they want it to be” (female, aged 65, lives with
husband)

22. Antiplatelets and others – lack of ‘evidence’
• I: do you feel the medication is doing you some good?
• P: ‘Well I hope so, see, because I don’t know do I, it’s thinning me
blood…and so I’m hoping it is - I’ve not got any side effects’ (female,
aged 53, lives with husband)

23. Strategies and solutions
• Dosette boxes
• Put the packet on kitchen worktop
• Put daily dose in a small container
• Remember to take when going out for day
• Strict regime
• Writing down Warfarin doses
• Write dates on packet – cross off when taken
• IPad and phone reminders
• Make sure the dog’s not in the room

24. Carer support
• (before the stroke) ‘I just presumed she were getting on with it and
she kept forgetting them…’ (husband of female, aged 55)
• ‘he took over – it was easier for him to keep his eye on than me’
(female, ages, 54, lives with husband)
• ‘he goes over the top a bit.. It was a shock for him too …so it was to
ease his mind’ (female, aged 65, lives with husband)

25. Other carers
• ‘At the beginning I used to get reminders from my brother in law and
sister in law, she says don’t forget to take the right amount’ (female,
aged 71, lives alone)
• ‘since I came out of hospital (my neighbours) have dropped it in
(prescription) and delivered it’ (male, aged 76, lives alone)

26. Evolving a system
‘I’ve got a routine because I have to have food as well with the
medication. I have me breakfast at work (at a care home) - so I actually
have the medication at work, at the same time as the residents take
theirs’ (male, aged 52, lives with wife)
‘They should invent one person who can put it all together… a
co-ordinator of pills’ (husband of female aged 55)

27. Conclusion
• Stroke survivors and carers experience complex challenges in managing
medication early after stroke
• Shorter lengths of stay allow little time for patient education
• Health professionals in stroke and in primary care should ensure all
patients receive tailored advice about how to manage their medication
before and early after discharge
• Patients living alone, and those on multiple medications, may be in
particular need of support

28. Acknowledgements
• This study was funded by the General Nursing Council Trust for
England and Wales
• Thanks to the staff and patients of the stroke unit which hosted the
study.