Informal carers' experience of caring for stroke survivors.

BACKGROUND: Stroke is the third most common cause of death in industrialized countries and a major cause of adult disability. However, the burden of caring for stroke survivors usually rests with family members who have neither chosen nor volunteered for the role of 'carer'.

AIMS: This paper reports on a study which aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland.

STUDY DESIGN: Semi-structured, taped interviews were conducted with 90 carers of stroke survivors one year after stroke and the data analysed using NUD*IST. The interviews were part of a larger study, which included the administration of a range of valid and reliable multidimensional instruments to both carers and stroke survivors. The interview prompt schedule had been developed and tested in a previous study.

FINDINGS: Although a medical emergency, stroke was not always diagnosed or treated as such by either the public or general practitioners. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives. They thought that they had not been prepared adequately for the caring role or assessed satisfactorily in terms of whether they could manage given their skill level, age and/or health status.

CONCLUSIONS: A public health campaign to educate and inform that stroke is a medical emergency is required if stroke disability is to be minimized. The use of new technologies should be considered in facilitating carers' learning how to care. There is a need to test alternative models of stroke follow-up in multi-centre studies that are holistic and place the carer-stroke survivor at the centre of care.