A report published in the open-access journal PLOS Med by researchers at the Institute of Health and Wellbeing says care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritised.
Prof Frances Mair, who led the study, said: "Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient.
"The treatment burden of self-care practices the patients must perform to follow the complicated management strategies that have been developed for this condition can often be overwhelming.
The researchers analysed data in 69 qualitative studies dealing with the experience of stroke management and identified four main areas of treatment burden: Making sense of stroke management and planning care, Interacting with others, including health care professionals, family and other patients with stroke Enacting management strategies, Reflecting on management to make decisions about self-care.
Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health care providers and unsatisfactory in-patient care.
"At the micro organisational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organise their care and develop coping strategies, which makes adherence to management strategies less likely.
"At the macro organisational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community.
"Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases.
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