Supporting stroke carers: evaluation of a new carer support initiative

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The importance of stroke caregivers. 80% of stroke survivors in the UK return home (Royal College of Physicians, 2006)Around half are dependent on caregivers for everyday activities (National Audit Office, 2005)Huge cost savings to NHS and Social ServicesWithout the support of carers many patie

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Supporting stroke carers: evaluation of a new carer support initiative

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1. Supporting stroke carers: evaluation of a new carer support initiative Dr David Gillespie Consultant Clinical Neuropsychologist Lothian Stroke MCN

2. The importance of stroke caregivers 80% of stroke survivors in the UK return home (Royal College of Physicians, 2006) Around half are dependent on caregivers for everyday activities (National Audit Office, 2005) Huge cost savings to NHS and Social Services Without the support of carers many patients would not be discharged home Carergiver stress can worsen depression in stroke survivors and predicts poor response to rehabilitation (e.g. Carnwath and Johnson, 1987)

3. The impact of informal stroke caring There is a significant impact of caring for someone with a stroke Mean number hours caring= 104 hrs/week (Smith et al., 2004) High levels of perceived strain (Lowe et al., 1999) Anxiety and depression (Stone et al., 2004) Social isolation (Stewart et al., 1998) Physical exhaustion (Sit et al., 2004) The negative impact of caring can be offset by targeted support Education (Clark et al., 2003) Structured support sessions (Evans et al., 1988)

4. Setting up the Edinburgh Stroke Carers Support Group Gap in service was identified: more support for carers needed Steering group convened Stroke MCN clinicians Chest Heart and Stroke Scotland (CHSS) Carer representative Consultation event held at Firrhill Centre Format of group discussed with stroke carers Approach made to VOCAL (Voice of Carers Across Lothian)

5. Publicity drive Contacted all GP surgeries in Edinburgh Publicised the group through the Stroke MCN Newspaper advertisement Posters on Stroke Units Social Services colleagues informed Local clinicians informed – flyers distributed

6. Format of group sessions Meetings held at Edinburgh office of VOCAL (city centre) Monthly (first Tuesday) 1.30 pm to 3 pm First half: presentation on a topic of carers’ choice “Tomorrow’s World” of stroke care Diet and healthy living Exercise and fitness Improving communication confidence after stroke Complementary therapies Second half: group discussion

7. Stroke carer newsletter Distributed monthly Targeted at carers who cannot attend the group Aim to build “community” of stroke carers Contains summaries of presentations, links and useful information about stroke and caring Copies available for download on the Stroke MCN website

8. Formal evaluation of the group Group evaluated 6-monthly Enjoyment and interest Impact on role as a carer Suggestions for improvement Newsletter evaluated too Evaluation forms mailed to all attendees and carers on the database (n= 54) Completed anonymously Completion rate 63% (n=34)

9. Formal evaluation (cont) 79% female 21% <60 yrs 79% >60 yrs 54% caring for husband 21% caring for wife 9% caring for son 6% caring for daughter 45% caring <2 yrs 55% caring >2 yrs

10. Formal evaluation (cont) Carer support group rated very highly Median enjoyment rating 8/10 Median level perceived support 7/10 Median help in role 7/10 Median difficulty getting to group 6/10 Newsletters valued highly Median content rating 9/10 Median informed about stroke-related things 8.5/10 Positive comments “It’s great meeting people in the same boat” “Since I’m unable to be at the meetings, keeping abreast of new developments reported in the newsletter is important to me ”

11. What next? More publicity driving! Stroke liaison nurses to ask all carers if they would like to be added to database Funding secured Unrestricted educational grant from Sanofi Aventis and partners 6-monthly evaluations Include measures of carer strain

12. Summary Carer support sessions and the carer newsletter were evaluated positively The number of carers who have attended is relatively small, and new members are needed Further evaluations will take place every 6 months

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