Priority 8 Stroke Rehabilitation and Long-term Care

UNCERTAINTY:How can people supporting stroke survivors work best with the stroke care team, and what personalised training and support is available for carers to enable them to support stroke survivors and their recovery, including those with communication, cognitive and engagement difficulties?  (JLA PSP Priority 8)
Overall ranking 8
JLA question ID 0106/8b
Explanatory note

Stroke is a leading cause of adult disability and often family members and friends shoulder a huge burden as carers. Instantly their relationship with the stroke survivor and their own lives are changed. This can be very difficult emotionally, and the financial costs of informal care are often The annual cost of unpaid care is estimated as £15.8million in the UK [Ref. 3]

Although carers can play a very important part alongside the professional stroke care team, there is very little evidence for support for carers to effectively work with them. This evidence is required to support stroke survivors and their families to recover and rebuild, and could reduce the financial burden of stroke.


 No evidence identified

Health Research Classification System category Stroke
Extra information provided by this PSP
Original uncertainty examples How can I, as a carer, boost my stroke survivor's confidence? ~  How can a family carer be best trained to look after the specific disabilities their patient suffers from, at low cost and in a timely manner? Why this question is important: •  When family carers take on the responsibility for looking after a stroke survivor with multiple disabilities, it is usually at short notice.  They are unlikely to already have training for caring for disability, to know what stroke is, or the effects it can have. •  Carers need to know what their patient’s specific disabilities are, how best to treat them, and what help may be available.•  They are very likely to lack confidence in the task, and will worry, just through ignorance. 
Submitted by Stroke Survivor x 11, Carer x 23, Health/social care professional x 25, Research Recommendations x 3
PSP information
PSP unique ID 0106
PSP name Stroke Rehabilitation and Long-term Care
Total number of uncertainties identified by this PSP. 93  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 19/20th April 2021