Abstract
Northern Ireland has one of the highest rates of stroke and heart attack in Europe. The Northern Ireland Chest Heart and Stroke Association (NICHSA) has been trying to improve it’s services for lay carers. In this research the following questions were answered: 1)What are the issues carers have to deal
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with in caring for a stroke patient? 2)What are carers’ needs with regards to services and support? 3) How can NICHSA meet these needs?
A literature review was done and a semi-structured interview was designed. Eight lay carers were interviewed about their problems and needs.
The results showed that the more severe the stroke had been, the more often carers felt down in mood, felt their role in life had changed, and the less guilty they felt asking others for help. Some carers felt frustrated with the patient from time to time as a result of the patient’s physical and cognitive disabilities.
The most important factor in the support network of carers was their family. But even though most carers felt they received great support from their families, they felt guilty sometimes to ask them for help. They felt the patient is their own responsibility.
The opinions on professional support were divided, though most carers were not very satisfied with the information and support received in hospital. Especially the preparation for the time directly after discharge and on the longer term was unsatisfactory. They also felt professionals didn’t consider carers enough and therefore felt forgotten about. They didn’t know whom to turn to for practical help, support and benefits. More information about this is necessary.
Carers felt down in mood from time to time as a result of the caring role. Often this was a result of being bound to the house because of the patient’s physical disabilities. They expressed a need for a break from caring, to relieve stress. Some of the carers that expressed a need for a break didn’t know how to realise this. More information about services available to them should be provided.
The changed character of patients had an effect both on the relationship between carer and patient, and on the carer’s social life. It led some carers to get frustrated with the patient. The relationship between carer and patient had an effect on how the caring was perceived by the carer.
Carers felt uncertain about the future. Carers mentioned feeling worried about becoming less able to cope with caring, either because of deterioration of the patient, or of their own health.
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