A recent randomized controlled trial evaluated the effects of specialist nurses providing information, advice and support to caregivers and patients at home during the first year after a stroke.
• Reported here are the results of a complementary study which used qualitative methods to examine the experience of patients and caregivers during the year of recovery after a stroke.
• We used semi-structured interviews with a purposively selected sample of 30 patients and 15 caregivers at the end of a randomized controlled trial (13–16 months post-stroke).
• Patients and caregivers provided vivid descriptions of the recovery process. Recovery was perceived in terms of the degree of congruence patients identified between their lives before, and after, stroke. Patients therefore had individual and personal yardsticks for measuring their recovery.
• In conclusion, further research and interventions must consider the diverse, complex, dynamic and highly personal character of stroke recovery. Traditional outcome measures are too simplistic to capture patients' and caregivers' experiences. There do not appear to be single or simple solutions to the problems of facilitating psycho-social adjustment.